Stories from the World of Medicine

Season

7

Episode

4

|

Oct 3, 2024

Fly Away

Mother of four, writer, and attorney Ann Schrooten reflects on a pivotal moment from her fifteen year journey caring for her son Jack, who lived with congenital muscular dystrophy.

0:00/1:34

Ben Konkol

Stories from the World of Medicine

Season

7

Episode

4

|

Oct 3, 2024

Fly Away

Mother of four, writer, and attorney Ann Schrooten reflects on a pivotal moment from her fifteen year journey caring for her son Jack, who lived with congenital muscular dystrophy.

0:00/1:34

Ben Konkol

Stories from the World of Medicine

Season

7

Episode

4

|

10/3/24

Fly Away

Mother of four, writer, and attorney Ann Schrooten reflects on a pivotal moment from her fifteen year journey caring for her son Jack, who lived with congenital muscular dystrophy.

0:00/1:34

Ben Konkol

About Our Guest

Ann is the mother of four children. Her third child, Jack, was born with a rare congenital muscular dystrophy who lived a love-filled life for 15 years. Ann co-authored the book Shared Struggles: Stories from Parents and Pediatricians Caring for Children with Serious Illnesses. She is an estate planning and probate attorney and the founder of The Willow Tree Foundation, an Arizona non-profit that supports parents of medically fragile children. Ann lives in Chandler, Arizona with her husband and their three adult children.

Watch Ann's story from our live storytelling event, "Taking Care":

About The Show

The Nocturnists is an award-winning medical storytelling podcast, hosted by physician Emily Silverman. We feature personal stories from frontline clinicians, conversations with healthcare-related authors, and art-makers. Our mission is to humanize healthcare and foster joy, wonder, and curiosity among clinicians and patients alike.

resources

Credits

About Our Guest

Ann is the mother of four children. Her third child, Jack, was born with a rare congenital muscular dystrophy who lived a love-filled life for 15 years. Ann co-authored the book Shared Struggles: Stories from Parents and Pediatricians Caring for Children with Serious Illnesses. She is an estate planning and probate attorney and the founder of The Willow Tree Foundation, an Arizona non-profit that supports parents of medically fragile children. Ann lives in Chandler, Arizona with her husband and their three adult children.

Watch Ann's story from our live storytelling event, "Taking Care":

About The Show

The Nocturnists is an award-winning medical storytelling podcast, hosted by physician Emily Silverman. We feature personal stories from frontline clinicians, conversations with healthcare-related authors, and art-makers. Our mission is to humanize healthcare and foster joy, wonder, and curiosity among clinicians and patients alike.

resources

Credits

About Our Guest

Ann is the mother of four children. Her third child, Jack, was born with a rare congenital muscular dystrophy who lived a love-filled life for 15 years. Ann co-authored the book Shared Struggles: Stories from Parents and Pediatricians Caring for Children with Serious Illnesses. She is an estate planning and probate attorney and the founder of The Willow Tree Foundation, an Arizona non-profit that supports parents of medically fragile children. Ann lives in Chandler, Arizona with her husband and their three adult children.

Watch Ann's story from our live storytelling event, "Taking Care":

About The Show

The Nocturnists is an award-winning medical storytelling podcast, hosted by physician Emily Silverman. We feature personal stories from frontline clinicians, conversations with healthcare-related authors, and art-makers. Our mission is to humanize healthcare and foster joy, wonder, and curiosity among clinicians and patients alike.

resources

Credits

Transcript

Note: The Nocturnists is created primarily as a listening experience. The audio contains emotion, emphasis, and soundscapes that are not easily transcribed. We encourage you to listen to the episode if at all possible. Our transcripts are produced using both speech recognition software and human copy editors, and may not be 100% accurate. Thank you for consulting the audio before quoting in print.

Emily Silverman 

You're listening to The Nocturnists, stories from the world of medicine. I'm Emily Silverman. Today we continue with another story from our live show in New York City in 2023. It's a show we co-produced with Danielle Ofri and Ashley McMullen of the literary magazine, Bellevue Literary Review, on the theme of taking care. The story came to us from mother of four, writer and attorney, Ann Schrooten. Ann's third child, Jack, was born with a rare congenital muscular dystrophy, and lived a love filled yet challenging life for 15 years. In Ann's story, she recounts a pivotal moment that occurred late one night while she was caring for Jack. Between eye contact, body language and the power of music, Jack was able to convey to her a powerful message, which helped her know what to do next to care for him best. I'm so glad that Ann brought this story to us. The perspective of parent-caregivers isn't one that we've heard much on this show, and I learned a lot from speaking with Ann about both the challenges and the rewards of that experience. After Ann's story, she and I speak about how she and her family managed to care for Jack at home all those years, despite him needing a ventilator and other complicated care, the multitude of emotions that could be conveyed between her and Jack without him uttering a single word, and her amazing work collecting stories from patients and clinicians, which she and one of Jack's doctors compiled in a book called Shared struggles: stories from parents and pediatricians caring for children with serious illnesses. But first, take a listen to Ann's story, which she performed live in New York City in 2023. It's called "Fly Away."

 

Ann Schrooten 

I'm jolted awake by the alarm blurring through the baby monitor, but sitting across the room on my bedroom floor. I glance at the clock on my nightstand. The green neon numbers read 2:26am. I lay there for a second, but my mind is telling me, "You need to get up." But I'm so tired, but he can't breathe. "You need to get up." I drag myself out of bed, fumble in the dark trying to find my cell phone, and I hurry down the dimly lit stairs. I'm wide awake now. My heart is racing. My body is tense as I make my way to Jack's room on the first floor of our home. The room is dark. Jack is lying on the far side of the queen size bed that dwarfs his small frame. And the glow from the bedside lamp reveals his jungle theme room with floor-to-ceiling trees and green leafy branches hanging from the ceiling. I turn on the bedroom light and hurry to Jack's side. I silence the alarm on the pulse oximeter. He looks at me. His eyes are open wide, looking panicked and scared. His cheeks are pale. The numbers on the pulse oximeter tell me his oxygen saturations are 80 and his heart rate is 175. Both those numbers should be closer to 100. I wonder, How long has this alarm been going off? How long has he been waiting for me? What these numbers tell me is Jack is struggling to breathe, and I need to quickly figure out why. Do the secretions need to be cleared from his airway? Or is this something more serious? Why can't he move air through his lungs? Jack is 15 years old. He's got sandy blonde hair, the sweetest smile, and when he's feeling well, his eyes sparkle and radiate joy. He spent the majority of the first year of his life in the hospital. He was the prince of the PICU— doctors, nurses, even parents of other kids in the unit would stop by his bed when they needed a pick me up. He was about the only kid in the unit who wasn't sedated, and he greeted everyone who stopped by his bed with a smile, and despite the fact that he was intubated with a breathing tube down his throat. When he was seven months old, he was discharged from the pediatric intensive care unit with a trach, a G-tube and connected to a ventilator, but with no diagnosis. We eventually received a diagnosis of congenital muscular dystrophy when he was eight, but his prognosis was still unknown. Jack is nonverbal, non mobile, and he depends on machines and competent and around the clock caregiving to keep him alive. For the last 15 years, every ounce of my being has been consumed with caring for Jack— keeping him healthy, keeping him safe and keeping him happy. But his body is starting to feel the impact of his disease, and I can see the weariness in his eyes. This last year has been a rough one. He's had kidney stones, broken bones, multiple procedures and hospital admissions, and so much pain. And no one can really tell us why. I just want for Jack to stop hurting. I grab the suction catheter next to Jack's pillow. I turn on a suction machine, and I thread the catheter down his trach to clear the secretions. His oxygen saturations climb slightly, 81...82... I look at Jack. His eyes are looking off into the distance, as if he's trying to escape. I need to get his oxygen into the 90s. I grab the blue Ambu bag hanging on the ventilator stand within arm's reach. An Ambu bag is a balloon like bag, about the size of a football that's used to manually push air into Jack's lungs. I disconnect the ventilator circus from his trach, attach the Ambu bag, and give the bag slow, deep, squeezes. 1... 2... 3... 4..., and I'm thinking to myself, "Who lives like this? Who bags her child back to life as if it's normal? How have I been doing this for 15 years?" Jack's oxygen finally climbs into the 90s, and the color slowly returns to his cheeks. I feel relief, but the adrenaline rush that comes from having to quickly troubleshoot and resolve Jack's inability to breathe has completely wiped me out. And the inability to breathe has completely wiped Jack out. I lean over his bed and cradle his soft cheeks in my hands. I touch my forehead to his, and I look into his beautiful, chestnut-colored eyes, and I hear him say, "Thanks, Mom. Can you stay here with me for a while?" Of course, he doesn't say it with words. Jack speaks with his eyes, his facial expressions, his body language, but it's his eyes that will grab you. They lock your gaze, and they draw you in. And with a deep tenderness and knowing, they speak directly to your heart. It's a connection that can't really be explained. It can only be felt. So I turn off the bedroom light, and I crawl into bed with Jack. I grab his hand, lacing my fingers through his bony and contracted fingers. And I give his hand a kiss, and I ask him, "Do you want to listen to some music, Jack?" I find my lullabies playlist on my phone, hit play, and I put the phone between our pillows. And with Jack's warm hand in mind, a calming peace fills the room as the rhythmic swishing of the ventilator, tethering him to this world, keeps time with the music streaming from my phone. I close my eyes, hoping to get a few hours of sleep before the manic morning that I know is waiting for me. But I can't sleep. My mind wanders, and my heart hurts for all that Jack has been through this last year. I open my eyes and I look over at Jack, and I see tears rolling down his cheeks. Jack's always been very sensitive to music, and it's not the first time that he's become emotional listening to a song. So I pick up my phone to see what song is playing... Fly away. I asked Jack, "Do you want to fly away?" And as soon as I asked the question, I feel a deep heaviness in my heart because I know the answer: yes. He wants to fly away, away from the pain and all it takes to live in his tired and broken body. And while he can't tell me what he wants, his eyes, his body, his spirit tell me he's tired, and he's ready to go home. But how do I stop after 15 years of doing? How do I just stop and accept that Jack's body is tired and broken, and there's absolutely nothing we can do to fix it. What if he thinks I'm giving up on him? What if we're missing something? I'm Jack's mom. It's who I am. Who will I be without him? But as I lay there holding Jack's hand, I accept that it's not about me and what I want. And as much as it will shatter my heart and bring me to my knees to live without him, I understand what I need to do. I need to listen to Jack. I need to let him take the lead, and I need to unconditionally love him home.

 

Emily Silverman 

I am here with Ann Schrooten. Ann, thanks so much for coming in.

 

Ann Schrooten 

Thanks so much for the invitation.

 

Emily Silverman 

So the story that you told at our show in New York was incredibly powerful, and as we were developing the story together for the stage, you shared that one of the reasons that you sent in the story is because the date of the storytelling show was on a special or a significant date for you and your family. So can you tell us about your decision to submit the story?

 

Ann Schrooten 

So when I saw the announcement for submitting stories for this live storytelling event, I noticed, first of all, that it was for other than just people that are in healthcare. And then when I noticed that the date was November 4th, that happens to be Jack's 25th birthday. So I'm like, "Okay, something's telling me I need to do this." So it was pretty special to be able to be on stage telling a story about Jack on his birthday.

 

Emily Silverman 

In the story, you say that Jack spent the majority of his first year of life in the hospital. You say that he was the prince of the PICU, and you also said that he didn't actually receive the diagnosis of congenital muscular dystrophy until he was 8. So that's 8 years of living with a child who has an illness and not having a label or a diagnosis for that—a very long period of uncertainty. We're doing a whole series now on the topic of uncertainty. So I was wondering if you could tell us about that journey, that 8 year journey from birth to a diagnosis, and what that was like for your family.

 

Ann Schrooten 

Well, I think initially, not having a diagnosis helped me to not put any limitations. Because when he was discharged from the hospital, at the time, doctors had told me, "Well, some kids just need to grow." And then they outgrow the trach, they outgrow the vent. Because he didn't have a diagnosis, my mindset was: Okay, I can push him then, because this is not going to be permanent. And quite frankly, I didn't want to know. I didn't search out a diagnosis, because probably deep down, I didn't want a diagnosis that was going to limit what he could or couldn't do, and was going to impact my life in a way I didn't want to know about. So for the first many years, 2 or 3 years, it was just doing everything I could to trial him off the ventilator, put him in a stander. Do things that would hopefully help him get stronger and move beyond this. I think by the age of 5, when he was still on the ventilator, not eating, not walking... I mean, I knew there was something else that he wasn't going to outgrow. There was an underlying disease, but because he was going to be under anesthesia, we discussed having a second muscle biopsy at that point, because they'd made more advances in diagnosing different muscular dystrophies. So at that point is the first time we finally heard that he did have a muscular dystrophy, and this is what was affected, and this was his subset. And I say it wasn't a light bulb moment. It was just information at that point.

 

Emily Silverman 

As we've been researching the topic of uncertainty here at The Nocturnists, we've heard a lot about how many people associate uncertainty with negative emotions. But there are scenarios where uncertainty is associated with positive emotions, like hope. One example that people often give is prognosis, that patients and families, when it comes to prognosis, actually seek to increase uncertainty or ambiguity because it offers a path to hope. And so it's interesting to hear you say that actually a diagnosis wasn't something that you were seeking or craving in particular.

 

Ann Schrooten 

No, I mean, I'm kind of a doer. And what do you work towards if you've got a diagnosis that says you're not going to get any better? Well, over time, you switch what your hopes are. You change what you hope for, for him. I think initially, my hopes were what I wanted, what I wanted for my family, and what I wanted for Jack. Then ultimately, you get a diagnosis and you gotta switch: "Okay, what's gonna be the best for Jack?"

 

Emily Silverman 

Where were you in your life when this happened? Did you have other children? Were you working? How did you make everything work with everything that Jack needed to be safe, to be healthy, and balancing that with other aspects of your life?

 

Ann Schrooten 

Well, I ask myself that, even today, sometimes I wonder... How did I do it? So when Jack was born, he had two older sisters. And he required 24/7 nursing when he came home. And I worked full time and my husband worked full time, and neither of us had the choice of not working. One of us worked for primarily benefits, and the other one primarily worked for income. So we had to work. What saved us is Jack qualified for home health care. He had home nurses. Nurses came to our house when we went to work, and after Jack, I had another child. So I had 4 kids. At one point in time, 4 kids going to 3 different schools and relying, to start my day before I could get anywhere, with the nurse showing up on time. I will say we were very, very lucky to have consistent home health nurses. He had the same nurse for 11 years.

 

Emily Silverman 

Wow.

 

Ann Schrooten 

Really, it was all dependent on home health nurses showing up so we could go to work. And if we hadn't had at home health nurses, our entire life and lifestyle would have been completely different.

 

Emily Silverman 

And was that covered?

 

Ann Schrooten 

It was covered by insurance, but we would have had to do a waiver program if insurance didn't pay for it. Then we moved to Arizona when he was 3 and a half, because that's where I'm from. We moved back home. He automatically qualified for Medicaid, so there was no waiver program. He qualified based on his being ventilator-dependent and him having no income. Every state is different in how they provide Medicaid, but Arizona was very good in that regard, that he automatically qualified. So it was always covered. I mean, it was covered when we went to work. I want to say that, yes, we had nursing, and we were very grateful for it, but that nurse showed up when we went to work, and the nurse left when we came home. So we didn't get much respite, because we're at work, and then once we're home, we're covering his care. We would get occasional weekends, which was very much appreciated, but for the most part, it was just... you're going... and then you've got 3 other kids that have needs. And I just think you do what you have to do... obviously, because I sit here today, and don't know how I did it.

 

Emily Silverman 

Just hearing you talk about juggling work and the other kids and Jack, I understand what you mean when you say, "I don't know how I did it." And I'm curious about the day-to-day. I know in the story, Jack is on a ventilator. Was he on a ventilator for his whole life? And what are some of the tasks that were required, separate from, obviously your relationship with him, but sort of the upkeep and the healthcare that was required. What were those tasks that the nurses were doing, or that you and your family were doing when the nurses went home?

 

Ann Schrooten 

He was on a ventilator his entire life. He was completely immobile, so he couldn't do anything for himself. He had a G-tube. He had to be fed. He had to have breathing treatments. He had to have respiratory care. He required suctioning. He couldn't cough. So it's more airway clearance. I mean, obviously we all want to breathe, and so that is your primary focus, is making sure that his airway was always clear of secretions so that he could breathe easily. It was connected to a pulse oximeter the entire time. When we went out, we didn't put him on the pulse ox, because we could look at him and see if there was any issues. But pretty much that was our monitoring was to watch his oxygen saturations all the time, because then you'd know we'd get in trouble. But I think that was the biggest thing, is he depended on us to breathe, literally. Bathing, diapering, feeding, and then getting him up and getting him in his chair and enjoying the day as much as you could with him and taking him out and taking him for walks. He never went to school. His teachers came to the house. His therapist came to the house. So he always had somebody in the house, doing things with him in addition to his nurses. He had therapists that were in and out often. He was quite adored by everybody because he just had a great personality.

 

Emily Silverman 

Yeah, one of the parts of your story that moved me the most was when you talk about his eyes, the way that you were able to communicate with him through body language, eye contact. And, it sounds like these caregivers coming into the house were also charmed by him and his personality. In the story, you say it's a connection that can't really be explained. You have to feel it. But now I'm gonna ask you, best you can, can you explain what that communication was like for somebody who can't speak for themself. How did that personality shine through?

 

Ann Schrooten 

I think it's just paying attention, paying attention to the person in front of you, looking at them... you can't help but feel a connection. I'll never forget when one of his new teachers emailed me and said, "I really enjoy Jack's sense of humor." And I thought, "Wow, she gets it." This kid doesn't speak, but she gets he has a sense of humor. If you walk by someone who's nonverbal and don't really pay attention, you're not going to allow yourself to get to know them. But eyes are pretty powerful things. So if you spend some time, and I think people who work with nonverbal children understand that. So his teachers and therapists understood that you can still connect with children or even adults who can't speak through nonverbal ways of communication. And I often said, I always feel like I was carrying on a conversation with Jack, and not even realizing, there were no words. It's just over time, just the aura, just the connection, just being in the presence of this person, that if you pay attention, they can communicate with you. It's powerful. You got to have patience with them to allow them to connect to you.

 

Emily Silverman 

This may be difficult to put words to, but when you talk about Jack's sense of humor, is there an example that comes to mind or a way that you can help the audience understand what was the quality of his sense of humor? How did that come out?

 

Ann Schrooten 

His smile and he could laugh. I mean, you couldn't really hear him laugh, but he always enjoyed it. If you got hurt, I mean, to explain that, if you tripped over something, or you dropped something, or somehow, you went "Ouch!"... he enjoyed that. And I often wonder if it's because, and maybe it's because you overreact when you get hurt and you say "ouch," or you, you know, you're more expressive. And so he caught on to that. But then, you know, when we take pictures of him, like if we were taking a family picture, pictures of me and him, we'd say, "Smile, Jack," and then his dad would be taking the picture, making goofy faces or doing something. It always got a laugh out of them. So it's that sense that he understood. He was there. He was aware of what was going on. And so... it's his face would light up, and he would smile, and he... and he would laugh.

 

Emily Silverman 

So you said that once Jack turned 5, you had a sense that this wasn't something he was going to grow out of. And I'm curious, once you had that realization, how did you think about the future? And how did you talk to doctors? Or how did doctors talk to you about the future? Did they give you a ballpark sense of where Jack might be headed? Or did you Intuit where Jack might be headed? Or did you prefer not to think about it in those terms?

 

Ann Schrooten 

Well, I do remember once, when he had the second muscle biopsy, and we knew he had a form of a congenital muscular dystrophy, asking his neurologist, "How much time do you think he has?" And I remember her saying, she just threw out, 10 years. Now, keep in mind, there's no other Jack out there. The type of congenital muscular dystrophy he has is on a spectrum, and he would have been, he would be at the worst end of the spectrum. Not all of kids with his type of congenital muscular dystrophy would be on a vent or have a trach or even be immobile. And I will say, Jack was extremely healthy. He never was sick, and in the hospital. He had surgeries that come along with having a congenital muscular dystrophy like spinal fusion, and he had procedures every year to check his airway and his eyes, because his muscular dystrophy affected his eyes. But Jack died when he was 15, so I never thought about it. I'm caught up in just surviving life with him and three other kids. But then he started having issues with breathing and just unknown issues of pain, and he ended up in the hospital quite a bit, starting the last two years of his life. So that's when it triggered me to think, "Okay, this is now starting to impact his body." I mean, obviously, it had a major impact on his body, but when you have a child on life support, we don't really think about life ending because you're on life support, right? So it's really kind of hard to visualize, okay, what's that gonna look like? You're where people who get to end of life are and you're already there, and this is keeping you alive. More than anything, he just was in a lot of pain. He ended up having issues with his heart. His heart function was affected. His ejection fraction was affected. All that stuff's on. Okay, now it's starting to affect his heart. He's in a lot of pain, so my focus became: okay, now we're really talking about quality of life here. To step back a little, palliative care was not a thing when Jack was first born. He was born in 1998. When he started having a lot of these pain issues and issues that put him in the hospital, I switched from his primary pediatrician, who was wonderful, to a palliative care doctor who followed medically complex kids. That was my first introduction to palliative care. Like many people, I thought, "Oh, palliative care means I'm giving up. I've now decided we're not doing anything for Jack." That's not true. So I learned a little more about what palliative care is, which helped manage his pain more than anything else. They didn't mind writing scripts for pain. And that's when we started the discussions about, where are we going from here? What's he telling us? What's his body doing? So he's 13 at this point. So we had a good run for 13 years. Well, I didn't even worry about this so much. But once his body started feeling the impact of his disease, then we went to palliative care. He still ended up in the hospital lot. His pain was getting worse, and then ultimately, we had an admission to the emergency room because he was in a lot of pain. And the year prior, we had had a three week admission trying to figure out what was the problem. Why was he in pain? We really never found out an answer. So that's when I said, "Okay, we're not going to do this anymore." I'm not going to put him in the hospital and have people poke and prod. And it was in the ER, 4 months before he died that we put him on hospice. It all came down to: I didn't want my child to suffer. He didn't suffer the first 13 years of his life. He suffered the last 2, and that's when those decisions were made.

 

Emily Silverman 

I remember when we were developing the story, you said more than one time, that you were adamant that you didn't want this to be a sad story, or at least not only a sad story. That there was so much joy baked into this story, and also that Jack's death, in your mind, was not a bad death, that there was, you know, peace and so on and so forth. So tell us more about that.

 

Ann Schrooten 

The parent voice number one isn't heard often enough. There are 100s and 1000s of parents behind closed doors living this life, so it was important to share that story. But our child is more than their pain and their limitations and their death. There's so much joy and so much good that Jack brought into my life, every person he's touched life. He was a teacher to all of us. It was far from an awful life. It was a beautiful life.

 

Emily Silverman 

I'll just say that I learned a lot from your story as a doctor myself, I don't think I fully realized what a lot of families go through with care in the home, and this moment at the beginning of the story where you're bagging him, and I was just thinking, like, I actually, I don't think I fully realized that this is something that's happening in people's home—this level of care. And hearing you talk about his ejection fraction and his oxygen saturation, I think at one point I might have even said to you, like, "Are you a doctor? Are you a nurse?" And you were like, "No." So I definitely learned a lot from your perspective. One line in your story stuck with me, which was, as you're contemplating this reality that Jack will someday die, you say to yourself, "I'm Jack's mom. That's who I am. Who will I be without him?" And so I'm wondering, in the years since Jack died, when so much of your time and energy—physical, emotional—are spent caring for him, and then that goes away... how do you reimagine that identity, or where does that go, or how does that get translated?

 

Ann Schrooten 

It's very difficult, but I was very lucky, because shortly after Jack died, maybe 6, 7 months, one of Jack's doctors reached out to me and said, "We should write a book together." And that is what saved me. This book took 6 years to write, but it kept me connected to my community. It kept me connected to his doctors. It kept me being allowed to still say his name. So I had that gift. I have a network of friends. Many of them have lost children. Many of them are still living the life, but I could stay connected to them. Since the book has been out, over the last two years, we've given multiple Grand Rounds. So here I am talking about Jack again, and I'm still talking about him and the life he had. Then I got to tell that story on stage. So I'm lucky, because I've had so many opportunities, and said "yes" to these opportunities, which I would never have done before Jack died. I am a completely different person than I was before Jack died. And I asked myself "Why?" The answer is, because what's the worst thing that could happen by saying yes, and the worst thing in my life has already happened. I have nothing to fear. I have no fear anymore. So I've said yes to these amazing opportunities that have been presented, and I have literally been busy the last 10 years working on things because of what Jack taught me and the people he connected me with.

 

Emily Silverman 

Tell us about the book. That's so intriguing that it was Jack's doctor who reached out with the idea. Tell us about how you and the doctor came up with the idea for the book, and what the book is and the response to the book. Tell us about that project.

 

Ann Schrooten 

Well, the doctor that I wrote the book with was actually one of the intensivists who took care of Jack during the first year of his life. And when Jack was discharged, he needed someone to follow him on the ventilator. They told me, I needed to pick a pulmonologist to follow him outside the hospital. And I was struggling with choosing someone. They never forced it on me. And one day, this particular doctor came up and said, "Do you want me to manage Jack's ventilator?," keeping in mind that we all thought this was short-term. So that's our connection for the first couple of years before we moved to Arizona. He managed Jack's ventilator. He was an intensivist and an anesthesiologist. He knew vents. Then once we moved to Arizona, and there was a break in the doctor-patient relationship, we continued to stay in touch. He was an amazing support for me. And again, back in 1999/2000 doctors didn't give out emails. He did, and I used it, and he graciously would listen, answer questions, help out, make connections if I needed them. So we basically kept in touch over the course of Jack's life. He even came and spoke at Jack's funeral. He reached out to me and said, "We have learned so much from each other. Let's expand this. Let's write a book, but let's bring in other parent voices and other physician voices." So the book is a compilation of stories written by parents and stories written by physicians about interactions that they've had in the care of medically complex children. The themes that come out that we talk about in these stories are trust, compassion, communication and hope. There's 46 stories. After each story is actually a parent commentary that I wrote and a physician commentary that Dr. Barry Markovitz wrote, who was my co-editor. So we give our own independent perspective on the message of the story. So over the last two and a half years, we've given 11 Grand Rounds and spoken at 3 national pediatric conferences. It's teaching through storytelling.

 

Emily Silverman 

Hope, compassion, communication and trust. It sounds like those are really important themes that came out, but I'm wondering if you can expand a bit more, like based on your experience, collecting these stories, putting them in the book, commenting on them, speaking to the physician co-author, going around and giving Grand Rounds. What have you learned from that process? What have you taken away? Whether it's changes that need to happen in the healthcare system, or changes that need to happen culturally. What did that whole experience teach you that you didn't already know from your experience with Jack?

 

Ann Schrooten 

It taught me that doctors want to hear from parents. They want to hear our perspective. They appreciate hearing our perspective. Some of our stories are very positive encounters with physicians, and some of our stories are encounters that could have gone better. And I remember, after one Grand Round, someone told us,  "That was me." You know, it was about a resident. "That was me." I'm learning from this, it's just been so heartwarming to me.

 

Emily Silverman 

So, what's next for you? You seem like a very busy person.

 

Ann Schrooten 

Well, what's next for me is we're working on a documentary, and we're interviewing physicians and parents who wrote stories for the book. We don't know what the documentary is going to look like yet. We have our final interview, actually this coming weekend, but we've interviewed 3 families and 3 physicians. So we'll see what that looks like. We expect to finish filming by the end of the year, and I'm hoping it's out next year. So that's what's next. And you bring up a good point, because I keep thinking, what's going to happen when all this ends... like, I don't know, but I think it'll be okay. I've healed in a lot of ways because I've had these opportunities. I'm not going to fall apart. I am going to be okay.

 

Emily Silverman 

Well, we may have to have you back to talk about the documentary once that comes out. That's really exciting. And if people are interested in picking up the book, please do that. And we're just really grateful that you were willing to come and share a piece of the story with us on The Nocturnists' stage. It was really powerful. So, thank you so much.

 

Ann Schrooten 

Thank you.

 

Emily Silverman 

This episode of the nocturnists was produced, edited and mixed by Sam Osborn. Our executive producer is Ali Block. Our head of story development is Molly Rose Williams and Ashley Pettit is our program manager. The Nocturnists is made possible by the California Medical Association, a physician-led organization that works tirelessly to make sure that the doctor-patient relationship remains at the center of medicine. To learn more about the CMA, visit CMAdocs.org. The stories from Season 7 come from our live storytelling show produced with Bellevue Literary Review on the theme of "Taking Care." The show took place at the Leonard Nimoy Thalia Theater at Symphony Space in New York City, and was originally recorded by Amigo Studio. The show was made possible by The Physicians Foundation and First Responders First. The Nocturnists is also made possible by donations from listeners like you. Thank you so much for supporting our work in storytelling. If you enjoyed this episode, please subscribe to us on your favorite podcast app and give us a rating or review to help others find us. I'm your host, Emily Silverman, see you next week.

Note: The Nocturnists is created primarily as a listening experience. The audio contains emotion, emphasis, and soundscapes that are not easily transcribed. We encourage you to listen to the episode if at all possible. Our transcripts are produced using both speech recognition software and human copy editors, and may not be 100% accurate. Thank you for consulting the audio before quoting in print.

Emily Silverman 

You're listening to The Nocturnists, stories from the world of medicine. I'm Emily Silverman. Today we continue with another story from our live show in New York City in 2023. It's a show we co-produced with Danielle Ofri and Ashley McMullen of the literary magazine, Bellevue Literary Review, on the theme of taking care. The story came to us from mother of four, writer and attorney, Ann Schrooten. Ann's third child, Jack, was born with a rare congenital muscular dystrophy, and lived a love filled yet challenging life for 15 years. In Ann's story, she recounts a pivotal moment that occurred late one night while she was caring for Jack. Between eye contact, body language and the power of music, Jack was able to convey to her a powerful message, which helped her know what to do next to care for him best. I'm so glad that Ann brought this story to us. The perspective of parent-caregivers isn't one that we've heard much on this show, and I learned a lot from speaking with Ann about both the challenges and the rewards of that experience. After Ann's story, she and I speak about how she and her family managed to care for Jack at home all those years, despite him needing a ventilator and other complicated care, the multitude of emotions that could be conveyed between her and Jack without him uttering a single word, and her amazing work collecting stories from patients and clinicians, which she and one of Jack's doctors compiled in a book called Shared struggles: stories from parents and pediatricians caring for children with serious illnesses. But first, take a listen to Ann's story, which she performed live in New York City in 2023. It's called "Fly Away."

 

Ann Schrooten 

I'm jolted awake by the alarm blurring through the baby monitor, but sitting across the room on my bedroom floor. I glance at the clock on my nightstand. The green neon numbers read 2:26am. I lay there for a second, but my mind is telling me, "You need to get up." But I'm so tired, but he can't breathe. "You need to get up." I drag myself out of bed, fumble in the dark trying to find my cell phone, and I hurry down the dimly lit stairs. I'm wide awake now. My heart is racing. My body is tense as I make my way to Jack's room on the first floor of our home. The room is dark. Jack is lying on the far side of the queen size bed that dwarfs his small frame. And the glow from the bedside lamp reveals his jungle theme room with floor-to-ceiling trees and green leafy branches hanging from the ceiling. I turn on the bedroom light and hurry to Jack's side. I silence the alarm on the pulse oximeter. He looks at me. His eyes are open wide, looking panicked and scared. His cheeks are pale. The numbers on the pulse oximeter tell me his oxygen saturations are 80 and his heart rate is 175. Both those numbers should be closer to 100. I wonder, How long has this alarm been going off? How long has he been waiting for me? What these numbers tell me is Jack is struggling to breathe, and I need to quickly figure out why. Do the secretions need to be cleared from his airway? Or is this something more serious? Why can't he move air through his lungs? Jack is 15 years old. He's got sandy blonde hair, the sweetest smile, and when he's feeling well, his eyes sparkle and radiate joy. He spent the majority of the first year of his life in the hospital. He was the prince of the PICU— doctors, nurses, even parents of other kids in the unit would stop by his bed when they needed a pick me up. He was about the only kid in the unit who wasn't sedated, and he greeted everyone who stopped by his bed with a smile, and despite the fact that he was intubated with a breathing tube down his throat. When he was seven months old, he was discharged from the pediatric intensive care unit with a trach, a G-tube and connected to a ventilator, but with no diagnosis. We eventually received a diagnosis of congenital muscular dystrophy when he was eight, but his prognosis was still unknown. Jack is nonverbal, non mobile, and he depends on machines and competent and around the clock caregiving to keep him alive. For the last 15 years, every ounce of my being has been consumed with caring for Jack— keeping him healthy, keeping him safe and keeping him happy. But his body is starting to feel the impact of his disease, and I can see the weariness in his eyes. This last year has been a rough one. He's had kidney stones, broken bones, multiple procedures and hospital admissions, and so much pain. And no one can really tell us why. I just want for Jack to stop hurting. I grab the suction catheter next to Jack's pillow. I turn on a suction machine, and I thread the catheter down his trach to clear the secretions. His oxygen saturations climb slightly, 81...82... I look at Jack. His eyes are looking off into the distance, as if he's trying to escape. I need to get his oxygen into the 90s. I grab the blue Ambu bag hanging on the ventilator stand within arm's reach. An Ambu bag is a balloon like bag, about the size of a football that's used to manually push air into Jack's lungs. I disconnect the ventilator circus from his trach, attach the Ambu bag, and give the bag slow, deep, squeezes. 1... 2... 3... 4..., and I'm thinking to myself, "Who lives like this? Who bags her child back to life as if it's normal? How have I been doing this for 15 years?" Jack's oxygen finally climbs into the 90s, and the color slowly returns to his cheeks. I feel relief, but the adrenaline rush that comes from having to quickly troubleshoot and resolve Jack's inability to breathe has completely wiped me out. And the inability to breathe has completely wiped Jack out. I lean over his bed and cradle his soft cheeks in my hands. I touch my forehead to his, and I look into his beautiful, chestnut-colored eyes, and I hear him say, "Thanks, Mom. Can you stay here with me for a while?" Of course, he doesn't say it with words. Jack speaks with his eyes, his facial expressions, his body language, but it's his eyes that will grab you. They lock your gaze, and they draw you in. And with a deep tenderness and knowing, they speak directly to your heart. It's a connection that can't really be explained. It can only be felt. So I turn off the bedroom light, and I crawl into bed with Jack. I grab his hand, lacing my fingers through his bony and contracted fingers. And I give his hand a kiss, and I ask him, "Do you want to listen to some music, Jack?" I find my lullabies playlist on my phone, hit play, and I put the phone between our pillows. And with Jack's warm hand in mind, a calming peace fills the room as the rhythmic swishing of the ventilator, tethering him to this world, keeps time with the music streaming from my phone. I close my eyes, hoping to get a few hours of sleep before the manic morning that I know is waiting for me. But I can't sleep. My mind wanders, and my heart hurts for all that Jack has been through this last year. I open my eyes and I look over at Jack, and I see tears rolling down his cheeks. Jack's always been very sensitive to music, and it's not the first time that he's become emotional listening to a song. So I pick up my phone to see what song is playing... Fly away. I asked Jack, "Do you want to fly away?" And as soon as I asked the question, I feel a deep heaviness in my heart because I know the answer: yes. He wants to fly away, away from the pain and all it takes to live in his tired and broken body. And while he can't tell me what he wants, his eyes, his body, his spirit tell me he's tired, and he's ready to go home. But how do I stop after 15 years of doing? How do I just stop and accept that Jack's body is tired and broken, and there's absolutely nothing we can do to fix it. What if he thinks I'm giving up on him? What if we're missing something? I'm Jack's mom. It's who I am. Who will I be without him? But as I lay there holding Jack's hand, I accept that it's not about me and what I want. And as much as it will shatter my heart and bring me to my knees to live without him, I understand what I need to do. I need to listen to Jack. I need to let him take the lead, and I need to unconditionally love him home.

 

Emily Silverman 

I am here with Ann Schrooten. Ann, thanks so much for coming in.

 

Ann Schrooten 

Thanks so much for the invitation.

 

Emily Silverman 

So the story that you told at our show in New York was incredibly powerful, and as we were developing the story together for the stage, you shared that one of the reasons that you sent in the story is because the date of the storytelling show was on a special or a significant date for you and your family. So can you tell us about your decision to submit the story?

 

Ann Schrooten 

So when I saw the announcement for submitting stories for this live storytelling event, I noticed, first of all, that it was for other than just people that are in healthcare. And then when I noticed that the date was November 4th, that happens to be Jack's 25th birthday. So I'm like, "Okay, something's telling me I need to do this." So it was pretty special to be able to be on stage telling a story about Jack on his birthday.

 

Emily Silverman 

In the story, you say that Jack spent the majority of his first year of life in the hospital. You say that he was the prince of the PICU, and you also said that he didn't actually receive the diagnosis of congenital muscular dystrophy until he was 8. So that's 8 years of living with a child who has an illness and not having a label or a diagnosis for that—a very long period of uncertainty. We're doing a whole series now on the topic of uncertainty. So I was wondering if you could tell us about that journey, that 8 year journey from birth to a diagnosis, and what that was like for your family.

 

Ann Schrooten 

Well, I think initially, not having a diagnosis helped me to not put any limitations. Because when he was discharged from the hospital, at the time, doctors had told me, "Well, some kids just need to grow." And then they outgrow the trach, they outgrow the vent. Because he didn't have a diagnosis, my mindset was: Okay, I can push him then, because this is not going to be permanent. And quite frankly, I didn't want to know. I didn't search out a diagnosis, because probably deep down, I didn't want a diagnosis that was going to limit what he could or couldn't do, and was going to impact my life in a way I didn't want to know about. So for the first many years, 2 or 3 years, it was just doing everything I could to trial him off the ventilator, put him in a stander. Do things that would hopefully help him get stronger and move beyond this. I think by the age of 5, when he was still on the ventilator, not eating, not walking... I mean, I knew there was something else that he wasn't going to outgrow. There was an underlying disease, but because he was going to be under anesthesia, we discussed having a second muscle biopsy at that point, because they'd made more advances in diagnosing different muscular dystrophies. So at that point is the first time we finally heard that he did have a muscular dystrophy, and this is what was affected, and this was his subset. And I say it wasn't a light bulb moment. It was just information at that point.

 

Emily Silverman 

As we've been researching the topic of uncertainty here at The Nocturnists, we've heard a lot about how many people associate uncertainty with negative emotions. But there are scenarios where uncertainty is associated with positive emotions, like hope. One example that people often give is prognosis, that patients and families, when it comes to prognosis, actually seek to increase uncertainty or ambiguity because it offers a path to hope. And so it's interesting to hear you say that actually a diagnosis wasn't something that you were seeking or craving in particular.

 

Ann Schrooten 

No, I mean, I'm kind of a doer. And what do you work towards if you've got a diagnosis that says you're not going to get any better? Well, over time, you switch what your hopes are. You change what you hope for, for him. I think initially, my hopes were what I wanted, what I wanted for my family, and what I wanted for Jack. Then ultimately, you get a diagnosis and you gotta switch: "Okay, what's gonna be the best for Jack?"

 

Emily Silverman 

Where were you in your life when this happened? Did you have other children? Were you working? How did you make everything work with everything that Jack needed to be safe, to be healthy, and balancing that with other aspects of your life?

 

Ann Schrooten 

Well, I ask myself that, even today, sometimes I wonder... How did I do it? So when Jack was born, he had two older sisters. And he required 24/7 nursing when he came home. And I worked full time and my husband worked full time, and neither of us had the choice of not working. One of us worked for primarily benefits, and the other one primarily worked for income. So we had to work. What saved us is Jack qualified for home health care. He had home nurses. Nurses came to our house when we went to work, and after Jack, I had another child. So I had 4 kids. At one point in time, 4 kids going to 3 different schools and relying, to start my day before I could get anywhere, with the nurse showing up on time. I will say we were very, very lucky to have consistent home health nurses. He had the same nurse for 11 years.

 

Emily Silverman 

Wow.

 

Ann Schrooten 

Really, it was all dependent on home health nurses showing up so we could go to work. And if we hadn't had at home health nurses, our entire life and lifestyle would have been completely different.

 

Emily Silverman 

And was that covered?

 

Ann Schrooten 

It was covered by insurance, but we would have had to do a waiver program if insurance didn't pay for it. Then we moved to Arizona when he was 3 and a half, because that's where I'm from. We moved back home. He automatically qualified for Medicaid, so there was no waiver program. He qualified based on his being ventilator-dependent and him having no income. Every state is different in how they provide Medicaid, but Arizona was very good in that regard, that he automatically qualified. So it was always covered. I mean, it was covered when we went to work. I want to say that, yes, we had nursing, and we were very grateful for it, but that nurse showed up when we went to work, and the nurse left when we came home. So we didn't get much respite, because we're at work, and then once we're home, we're covering his care. We would get occasional weekends, which was very much appreciated, but for the most part, it was just... you're going... and then you've got 3 other kids that have needs. And I just think you do what you have to do... obviously, because I sit here today, and don't know how I did it.

 

Emily Silverman 

Just hearing you talk about juggling work and the other kids and Jack, I understand what you mean when you say, "I don't know how I did it." And I'm curious about the day-to-day. I know in the story, Jack is on a ventilator. Was he on a ventilator for his whole life? And what are some of the tasks that were required, separate from, obviously your relationship with him, but sort of the upkeep and the healthcare that was required. What were those tasks that the nurses were doing, or that you and your family were doing when the nurses went home?

 

Ann Schrooten 

He was on a ventilator his entire life. He was completely immobile, so he couldn't do anything for himself. He had a G-tube. He had to be fed. He had to have breathing treatments. He had to have respiratory care. He required suctioning. He couldn't cough. So it's more airway clearance. I mean, obviously we all want to breathe, and so that is your primary focus, is making sure that his airway was always clear of secretions so that he could breathe easily. It was connected to a pulse oximeter the entire time. When we went out, we didn't put him on the pulse ox, because we could look at him and see if there was any issues. But pretty much that was our monitoring was to watch his oxygen saturations all the time, because then you'd know we'd get in trouble. But I think that was the biggest thing, is he depended on us to breathe, literally. Bathing, diapering, feeding, and then getting him up and getting him in his chair and enjoying the day as much as you could with him and taking him out and taking him for walks. He never went to school. His teachers came to the house. His therapist came to the house. So he always had somebody in the house, doing things with him in addition to his nurses. He had therapists that were in and out often. He was quite adored by everybody because he just had a great personality.

 

Emily Silverman 

Yeah, one of the parts of your story that moved me the most was when you talk about his eyes, the way that you were able to communicate with him through body language, eye contact. And, it sounds like these caregivers coming into the house were also charmed by him and his personality. In the story, you say it's a connection that can't really be explained. You have to feel it. But now I'm gonna ask you, best you can, can you explain what that communication was like for somebody who can't speak for themself. How did that personality shine through?

 

Ann Schrooten 

I think it's just paying attention, paying attention to the person in front of you, looking at them... you can't help but feel a connection. I'll never forget when one of his new teachers emailed me and said, "I really enjoy Jack's sense of humor." And I thought, "Wow, she gets it." This kid doesn't speak, but she gets he has a sense of humor. If you walk by someone who's nonverbal and don't really pay attention, you're not going to allow yourself to get to know them. But eyes are pretty powerful things. So if you spend some time, and I think people who work with nonverbal children understand that. So his teachers and therapists understood that you can still connect with children or even adults who can't speak through nonverbal ways of communication. And I often said, I always feel like I was carrying on a conversation with Jack, and not even realizing, there were no words. It's just over time, just the aura, just the connection, just being in the presence of this person, that if you pay attention, they can communicate with you. It's powerful. You got to have patience with them to allow them to connect to you.

 

Emily Silverman 

This may be difficult to put words to, but when you talk about Jack's sense of humor, is there an example that comes to mind or a way that you can help the audience understand what was the quality of his sense of humor? How did that come out?

 

Ann Schrooten 

His smile and he could laugh. I mean, you couldn't really hear him laugh, but he always enjoyed it. If you got hurt, I mean, to explain that, if you tripped over something, or you dropped something, or somehow, you went "Ouch!"... he enjoyed that. And I often wonder if it's because, and maybe it's because you overreact when you get hurt and you say "ouch," or you, you know, you're more expressive. And so he caught on to that. But then, you know, when we take pictures of him, like if we were taking a family picture, pictures of me and him, we'd say, "Smile, Jack," and then his dad would be taking the picture, making goofy faces or doing something. It always got a laugh out of them. So it's that sense that he understood. He was there. He was aware of what was going on. And so... it's his face would light up, and he would smile, and he... and he would laugh.

 

Emily Silverman 

So you said that once Jack turned 5, you had a sense that this wasn't something he was going to grow out of. And I'm curious, once you had that realization, how did you think about the future? And how did you talk to doctors? Or how did doctors talk to you about the future? Did they give you a ballpark sense of where Jack might be headed? Or did you Intuit where Jack might be headed? Or did you prefer not to think about it in those terms?

 

Ann Schrooten 

Well, I do remember once, when he had the second muscle biopsy, and we knew he had a form of a congenital muscular dystrophy, asking his neurologist, "How much time do you think he has?" And I remember her saying, she just threw out, 10 years. Now, keep in mind, there's no other Jack out there. The type of congenital muscular dystrophy he has is on a spectrum, and he would have been, he would be at the worst end of the spectrum. Not all of kids with his type of congenital muscular dystrophy would be on a vent or have a trach or even be immobile. And I will say, Jack was extremely healthy. He never was sick, and in the hospital. He had surgeries that come along with having a congenital muscular dystrophy like spinal fusion, and he had procedures every year to check his airway and his eyes, because his muscular dystrophy affected his eyes. But Jack died when he was 15, so I never thought about it. I'm caught up in just surviving life with him and three other kids. But then he started having issues with breathing and just unknown issues of pain, and he ended up in the hospital quite a bit, starting the last two years of his life. So that's when it triggered me to think, "Okay, this is now starting to impact his body." I mean, obviously, it had a major impact on his body, but when you have a child on life support, we don't really think about life ending because you're on life support, right? So it's really kind of hard to visualize, okay, what's that gonna look like? You're where people who get to end of life are and you're already there, and this is keeping you alive. More than anything, he just was in a lot of pain. He ended up having issues with his heart. His heart function was affected. His ejection fraction was affected. All that stuff's on. Okay, now it's starting to affect his heart. He's in a lot of pain, so my focus became: okay, now we're really talking about quality of life here. To step back a little, palliative care was not a thing when Jack was first born. He was born in 1998. When he started having a lot of these pain issues and issues that put him in the hospital, I switched from his primary pediatrician, who was wonderful, to a palliative care doctor who followed medically complex kids. That was my first introduction to palliative care. Like many people, I thought, "Oh, palliative care means I'm giving up. I've now decided we're not doing anything for Jack." That's not true. So I learned a little more about what palliative care is, which helped manage his pain more than anything else. They didn't mind writing scripts for pain. And that's when we started the discussions about, where are we going from here? What's he telling us? What's his body doing? So he's 13 at this point. So we had a good run for 13 years. Well, I didn't even worry about this so much. But once his body started feeling the impact of his disease, then we went to palliative care. He still ended up in the hospital lot. His pain was getting worse, and then ultimately, we had an admission to the emergency room because he was in a lot of pain. And the year prior, we had had a three week admission trying to figure out what was the problem. Why was he in pain? We really never found out an answer. So that's when I said, "Okay, we're not going to do this anymore." I'm not going to put him in the hospital and have people poke and prod. And it was in the ER, 4 months before he died that we put him on hospice. It all came down to: I didn't want my child to suffer. He didn't suffer the first 13 years of his life. He suffered the last 2, and that's when those decisions were made.

 

Emily Silverman 

I remember when we were developing the story, you said more than one time, that you were adamant that you didn't want this to be a sad story, or at least not only a sad story. That there was so much joy baked into this story, and also that Jack's death, in your mind, was not a bad death, that there was, you know, peace and so on and so forth. So tell us more about that.

 

Ann Schrooten 

The parent voice number one isn't heard often enough. There are 100s and 1000s of parents behind closed doors living this life, so it was important to share that story. But our child is more than their pain and their limitations and their death. There's so much joy and so much good that Jack brought into my life, every person he's touched life. He was a teacher to all of us. It was far from an awful life. It was a beautiful life.

 

Emily Silverman 

I'll just say that I learned a lot from your story as a doctor myself, I don't think I fully realized what a lot of families go through with care in the home, and this moment at the beginning of the story where you're bagging him, and I was just thinking, like, I actually, I don't think I fully realized that this is something that's happening in people's home—this level of care. And hearing you talk about his ejection fraction and his oxygen saturation, I think at one point I might have even said to you, like, "Are you a doctor? Are you a nurse?" And you were like, "No." So I definitely learned a lot from your perspective. One line in your story stuck with me, which was, as you're contemplating this reality that Jack will someday die, you say to yourself, "I'm Jack's mom. That's who I am. Who will I be without him?" And so I'm wondering, in the years since Jack died, when so much of your time and energy—physical, emotional—are spent caring for him, and then that goes away... how do you reimagine that identity, or where does that go, or how does that get translated?

 

Ann Schrooten 

It's very difficult, but I was very lucky, because shortly after Jack died, maybe 6, 7 months, one of Jack's doctors reached out to me and said, "We should write a book together." And that is what saved me. This book took 6 years to write, but it kept me connected to my community. It kept me connected to his doctors. It kept me being allowed to still say his name. So I had that gift. I have a network of friends. Many of them have lost children. Many of them are still living the life, but I could stay connected to them. Since the book has been out, over the last two years, we've given multiple Grand Rounds. So here I am talking about Jack again, and I'm still talking about him and the life he had. Then I got to tell that story on stage. So I'm lucky, because I've had so many opportunities, and said "yes" to these opportunities, which I would never have done before Jack died. I am a completely different person than I was before Jack died. And I asked myself "Why?" The answer is, because what's the worst thing that could happen by saying yes, and the worst thing in my life has already happened. I have nothing to fear. I have no fear anymore. So I've said yes to these amazing opportunities that have been presented, and I have literally been busy the last 10 years working on things because of what Jack taught me and the people he connected me with.

 

Emily Silverman 

Tell us about the book. That's so intriguing that it was Jack's doctor who reached out with the idea. Tell us about how you and the doctor came up with the idea for the book, and what the book is and the response to the book. Tell us about that project.

 

Ann Schrooten 

Well, the doctor that I wrote the book with was actually one of the intensivists who took care of Jack during the first year of his life. And when Jack was discharged, he needed someone to follow him on the ventilator. They told me, I needed to pick a pulmonologist to follow him outside the hospital. And I was struggling with choosing someone. They never forced it on me. And one day, this particular doctor came up and said, "Do you want me to manage Jack's ventilator?," keeping in mind that we all thought this was short-term. So that's our connection for the first couple of years before we moved to Arizona. He managed Jack's ventilator. He was an intensivist and an anesthesiologist. He knew vents. Then once we moved to Arizona, and there was a break in the doctor-patient relationship, we continued to stay in touch. He was an amazing support for me. And again, back in 1999/2000 doctors didn't give out emails. He did, and I used it, and he graciously would listen, answer questions, help out, make connections if I needed them. So we basically kept in touch over the course of Jack's life. He even came and spoke at Jack's funeral. He reached out to me and said, "We have learned so much from each other. Let's expand this. Let's write a book, but let's bring in other parent voices and other physician voices." So the book is a compilation of stories written by parents and stories written by physicians about interactions that they've had in the care of medically complex children. The themes that come out that we talk about in these stories are trust, compassion, communication and hope. There's 46 stories. After each story is actually a parent commentary that I wrote and a physician commentary that Dr. Barry Markovitz wrote, who was my co-editor. So we give our own independent perspective on the message of the story. So over the last two and a half years, we've given 11 Grand Rounds and spoken at 3 national pediatric conferences. It's teaching through storytelling.

 

Emily Silverman 

Hope, compassion, communication and trust. It sounds like those are really important themes that came out, but I'm wondering if you can expand a bit more, like based on your experience, collecting these stories, putting them in the book, commenting on them, speaking to the physician co-author, going around and giving Grand Rounds. What have you learned from that process? What have you taken away? Whether it's changes that need to happen in the healthcare system, or changes that need to happen culturally. What did that whole experience teach you that you didn't already know from your experience with Jack?

 

Ann Schrooten 

It taught me that doctors want to hear from parents. They want to hear our perspective. They appreciate hearing our perspective. Some of our stories are very positive encounters with physicians, and some of our stories are encounters that could have gone better. And I remember, after one Grand Round, someone told us,  "That was me." You know, it was about a resident. "That was me." I'm learning from this, it's just been so heartwarming to me.

 

Emily Silverman 

So, what's next for you? You seem like a very busy person.

 

Ann Schrooten 

Well, what's next for me is we're working on a documentary, and we're interviewing physicians and parents who wrote stories for the book. We don't know what the documentary is going to look like yet. We have our final interview, actually this coming weekend, but we've interviewed 3 families and 3 physicians. So we'll see what that looks like. We expect to finish filming by the end of the year, and I'm hoping it's out next year. So that's what's next. And you bring up a good point, because I keep thinking, what's going to happen when all this ends... like, I don't know, but I think it'll be okay. I've healed in a lot of ways because I've had these opportunities. I'm not going to fall apart. I am going to be okay.

 

Emily Silverman 

Well, we may have to have you back to talk about the documentary once that comes out. That's really exciting. And if people are interested in picking up the book, please do that. And we're just really grateful that you were willing to come and share a piece of the story with us on The Nocturnists' stage. It was really powerful. So, thank you so much.

 

Ann Schrooten 

Thank you.

 

Emily Silverman 

This episode of the nocturnists was produced, edited and mixed by Sam Osborn. Our executive producer is Ali Block. Our head of story development is Molly Rose Williams and Ashley Pettit is our program manager. The Nocturnists is made possible by the California Medical Association, a physician-led organization that works tirelessly to make sure that the doctor-patient relationship remains at the center of medicine. To learn more about the CMA, visit CMAdocs.org. The stories from Season 7 come from our live storytelling show produced with Bellevue Literary Review on the theme of "Taking Care." The show took place at the Leonard Nimoy Thalia Theater at Symphony Space in New York City, and was originally recorded by Amigo Studio. The show was made possible by The Physicians Foundation and First Responders First. The Nocturnists is also made possible by donations from listeners like you. Thank you so much for supporting our work in storytelling. If you enjoyed this episode, please subscribe to us on your favorite podcast app and give us a rating or review to help others find us. I'm your host, Emily Silverman, see you next week.

Transcript

Note: The Nocturnists is created primarily as a listening experience. The audio contains emotion, emphasis, and soundscapes that are not easily transcribed. We encourage you to listen to the episode if at all possible. Our transcripts are produced using both speech recognition software and human copy editors, and may not be 100% accurate. Thank you for consulting the audio before quoting in print.

Emily Silverman 

You're listening to The Nocturnists, stories from the world of medicine. I'm Emily Silverman. Today we continue with another story from our live show in New York City in 2023. It's a show we co-produced with Danielle Ofri and Ashley McMullen of the literary magazine, Bellevue Literary Review, on the theme of taking care. The story came to us from mother of four, writer and attorney, Ann Schrooten. Ann's third child, Jack, was born with a rare congenital muscular dystrophy, and lived a love filled yet challenging life for 15 years. In Ann's story, she recounts a pivotal moment that occurred late one night while she was caring for Jack. Between eye contact, body language and the power of music, Jack was able to convey to her a powerful message, which helped her know what to do next to care for him best. I'm so glad that Ann brought this story to us. The perspective of parent-caregivers isn't one that we've heard much on this show, and I learned a lot from speaking with Ann about both the challenges and the rewards of that experience. After Ann's story, she and I speak about how she and her family managed to care for Jack at home all those years, despite him needing a ventilator and other complicated care, the multitude of emotions that could be conveyed between her and Jack without him uttering a single word, and her amazing work collecting stories from patients and clinicians, which she and one of Jack's doctors compiled in a book called Shared struggles: stories from parents and pediatricians caring for children with serious illnesses. But first, take a listen to Ann's story, which she performed live in New York City in 2023. It's called "Fly Away."

 

Ann Schrooten 

I'm jolted awake by the alarm blurring through the baby monitor, but sitting across the room on my bedroom floor. I glance at the clock on my nightstand. The green neon numbers read 2:26am. I lay there for a second, but my mind is telling me, "You need to get up." But I'm so tired, but he can't breathe. "You need to get up." I drag myself out of bed, fumble in the dark trying to find my cell phone, and I hurry down the dimly lit stairs. I'm wide awake now. My heart is racing. My body is tense as I make my way to Jack's room on the first floor of our home. The room is dark. Jack is lying on the far side of the queen size bed that dwarfs his small frame. And the glow from the bedside lamp reveals his jungle theme room with floor-to-ceiling trees and green leafy branches hanging from the ceiling. I turn on the bedroom light and hurry to Jack's side. I silence the alarm on the pulse oximeter. He looks at me. His eyes are open wide, looking panicked and scared. His cheeks are pale. The numbers on the pulse oximeter tell me his oxygen saturations are 80 and his heart rate is 175. Both those numbers should be closer to 100. I wonder, How long has this alarm been going off? How long has he been waiting for me? What these numbers tell me is Jack is struggling to breathe, and I need to quickly figure out why. Do the secretions need to be cleared from his airway? Or is this something more serious? Why can't he move air through his lungs? Jack is 15 years old. He's got sandy blonde hair, the sweetest smile, and when he's feeling well, his eyes sparkle and radiate joy. He spent the majority of the first year of his life in the hospital. He was the prince of the PICU— doctors, nurses, even parents of other kids in the unit would stop by his bed when they needed a pick me up. He was about the only kid in the unit who wasn't sedated, and he greeted everyone who stopped by his bed with a smile, and despite the fact that he was intubated with a breathing tube down his throat. When he was seven months old, he was discharged from the pediatric intensive care unit with a trach, a G-tube and connected to a ventilator, but with no diagnosis. We eventually received a diagnosis of congenital muscular dystrophy when he was eight, but his prognosis was still unknown. Jack is nonverbal, non mobile, and he depends on machines and competent and around the clock caregiving to keep him alive. For the last 15 years, every ounce of my being has been consumed with caring for Jack— keeping him healthy, keeping him safe and keeping him happy. But his body is starting to feel the impact of his disease, and I can see the weariness in his eyes. This last year has been a rough one. He's had kidney stones, broken bones, multiple procedures and hospital admissions, and so much pain. And no one can really tell us why. I just want for Jack to stop hurting. I grab the suction catheter next to Jack's pillow. I turn on a suction machine, and I thread the catheter down his trach to clear the secretions. His oxygen saturations climb slightly, 81...82... I look at Jack. His eyes are looking off into the distance, as if he's trying to escape. I need to get his oxygen into the 90s. I grab the blue Ambu bag hanging on the ventilator stand within arm's reach. An Ambu bag is a balloon like bag, about the size of a football that's used to manually push air into Jack's lungs. I disconnect the ventilator circus from his trach, attach the Ambu bag, and give the bag slow, deep, squeezes. 1... 2... 3... 4..., and I'm thinking to myself, "Who lives like this? Who bags her child back to life as if it's normal? How have I been doing this for 15 years?" Jack's oxygen finally climbs into the 90s, and the color slowly returns to his cheeks. I feel relief, but the adrenaline rush that comes from having to quickly troubleshoot and resolve Jack's inability to breathe has completely wiped me out. And the inability to breathe has completely wiped Jack out. I lean over his bed and cradle his soft cheeks in my hands. I touch my forehead to his, and I look into his beautiful, chestnut-colored eyes, and I hear him say, "Thanks, Mom. Can you stay here with me for a while?" Of course, he doesn't say it with words. Jack speaks with his eyes, his facial expressions, his body language, but it's his eyes that will grab you. They lock your gaze, and they draw you in. And with a deep tenderness and knowing, they speak directly to your heart. It's a connection that can't really be explained. It can only be felt. So I turn off the bedroom light, and I crawl into bed with Jack. I grab his hand, lacing my fingers through his bony and contracted fingers. And I give his hand a kiss, and I ask him, "Do you want to listen to some music, Jack?" I find my lullabies playlist on my phone, hit play, and I put the phone between our pillows. And with Jack's warm hand in mind, a calming peace fills the room as the rhythmic swishing of the ventilator, tethering him to this world, keeps time with the music streaming from my phone. I close my eyes, hoping to get a few hours of sleep before the manic morning that I know is waiting for me. But I can't sleep. My mind wanders, and my heart hurts for all that Jack has been through this last year. I open my eyes and I look over at Jack, and I see tears rolling down his cheeks. Jack's always been very sensitive to music, and it's not the first time that he's become emotional listening to a song. So I pick up my phone to see what song is playing... Fly away. I asked Jack, "Do you want to fly away?" And as soon as I asked the question, I feel a deep heaviness in my heart because I know the answer: yes. He wants to fly away, away from the pain and all it takes to live in his tired and broken body. And while he can't tell me what he wants, his eyes, his body, his spirit tell me he's tired, and he's ready to go home. But how do I stop after 15 years of doing? How do I just stop and accept that Jack's body is tired and broken, and there's absolutely nothing we can do to fix it. What if he thinks I'm giving up on him? What if we're missing something? I'm Jack's mom. It's who I am. Who will I be without him? But as I lay there holding Jack's hand, I accept that it's not about me and what I want. And as much as it will shatter my heart and bring me to my knees to live without him, I understand what I need to do. I need to listen to Jack. I need to let him take the lead, and I need to unconditionally love him home.

 

Emily Silverman 

I am here with Ann Schrooten. Ann, thanks so much for coming in.

 

Ann Schrooten 

Thanks so much for the invitation.

 

Emily Silverman 

So the story that you told at our show in New York was incredibly powerful, and as we were developing the story together for the stage, you shared that one of the reasons that you sent in the story is because the date of the storytelling show was on a special or a significant date for you and your family. So can you tell us about your decision to submit the story?

 

Ann Schrooten 

So when I saw the announcement for submitting stories for this live storytelling event, I noticed, first of all, that it was for other than just people that are in healthcare. And then when I noticed that the date was November 4th, that happens to be Jack's 25th birthday. So I'm like, "Okay, something's telling me I need to do this." So it was pretty special to be able to be on stage telling a story about Jack on his birthday.

 

Emily Silverman 

In the story, you say that Jack spent the majority of his first year of life in the hospital. You say that he was the prince of the PICU, and you also said that he didn't actually receive the diagnosis of congenital muscular dystrophy until he was 8. So that's 8 years of living with a child who has an illness and not having a label or a diagnosis for that—a very long period of uncertainty. We're doing a whole series now on the topic of uncertainty. So I was wondering if you could tell us about that journey, that 8 year journey from birth to a diagnosis, and what that was like for your family.

 

Ann Schrooten 

Well, I think initially, not having a diagnosis helped me to not put any limitations. Because when he was discharged from the hospital, at the time, doctors had told me, "Well, some kids just need to grow." And then they outgrow the trach, they outgrow the vent. Because he didn't have a diagnosis, my mindset was: Okay, I can push him then, because this is not going to be permanent. And quite frankly, I didn't want to know. I didn't search out a diagnosis, because probably deep down, I didn't want a diagnosis that was going to limit what he could or couldn't do, and was going to impact my life in a way I didn't want to know about. So for the first many years, 2 or 3 years, it was just doing everything I could to trial him off the ventilator, put him in a stander. Do things that would hopefully help him get stronger and move beyond this. I think by the age of 5, when he was still on the ventilator, not eating, not walking... I mean, I knew there was something else that he wasn't going to outgrow. There was an underlying disease, but because he was going to be under anesthesia, we discussed having a second muscle biopsy at that point, because they'd made more advances in diagnosing different muscular dystrophies. So at that point is the first time we finally heard that he did have a muscular dystrophy, and this is what was affected, and this was his subset. And I say it wasn't a light bulb moment. It was just information at that point.

 

Emily Silverman 

As we've been researching the topic of uncertainty here at The Nocturnists, we've heard a lot about how many people associate uncertainty with negative emotions. But there are scenarios where uncertainty is associated with positive emotions, like hope. One example that people often give is prognosis, that patients and families, when it comes to prognosis, actually seek to increase uncertainty or ambiguity because it offers a path to hope. And so it's interesting to hear you say that actually a diagnosis wasn't something that you were seeking or craving in particular.

 

Ann Schrooten 

No, I mean, I'm kind of a doer. And what do you work towards if you've got a diagnosis that says you're not going to get any better? Well, over time, you switch what your hopes are. You change what you hope for, for him. I think initially, my hopes were what I wanted, what I wanted for my family, and what I wanted for Jack. Then ultimately, you get a diagnosis and you gotta switch: "Okay, what's gonna be the best for Jack?"

 

Emily Silverman 

Where were you in your life when this happened? Did you have other children? Were you working? How did you make everything work with everything that Jack needed to be safe, to be healthy, and balancing that with other aspects of your life?

 

Ann Schrooten 

Well, I ask myself that, even today, sometimes I wonder... How did I do it? So when Jack was born, he had two older sisters. And he required 24/7 nursing when he came home. And I worked full time and my husband worked full time, and neither of us had the choice of not working. One of us worked for primarily benefits, and the other one primarily worked for income. So we had to work. What saved us is Jack qualified for home health care. He had home nurses. Nurses came to our house when we went to work, and after Jack, I had another child. So I had 4 kids. At one point in time, 4 kids going to 3 different schools and relying, to start my day before I could get anywhere, with the nurse showing up on time. I will say we were very, very lucky to have consistent home health nurses. He had the same nurse for 11 years.

 

Emily Silverman 

Wow.

 

Ann Schrooten 

Really, it was all dependent on home health nurses showing up so we could go to work. And if we hadn't had at home health nurses, our entire life and lifestyle would have been completely different.

 

Emily Silverman 

And was that covered?

 

Ann Schrooten 

It was covered by insurance, but we would have had to do a waiver program if insurance didn't pay for it. Then we moved to Arizona when he was 3 and a half, because that's where I'm from. We moved back home. He automatically qualified for Medicaid, so there was no waiver program. He qualified based on his being ventilator-dependent and him having no income. Every state is different in how they provide Medicaid, but Arizona was very good in that regard, that he automatically qualified. So it was always covered. I mean, it was covered when we went to work. I want to say that, yes, we had nursing, and we were very grateful for it, but that nurse showed up when we went to work, and the nurse left when we came home. So we didn't get much respite, because we're at work, and then once we're home, we're covering his care. We would get occasional weekends, which was very much appreciated, but for the most part, it was just... you're going... and then you've got 3 other kids that have needs. And I just think you do what you have to do... obviously, because I sit here today, and don't know how I did it.

 

Emily Silverman 

Just hearing you talk about juggling work and the other kids and Jack, I understand what you mean when you say, "I don't know how I did it." And I'm curious about the day-to-day. I know in the story, Jack is on a ventilator. Was he on a ventilator for his whole life? And what are some of the tasks that were required, separate from, obviously your relationship with him, but sort of the upkeep and the healthcare that was required. What were those tasks that the nurses were doing, or that you and your family were doing when the nurses went home?

 

Ann Schrooten 

He was on a ventilator his entire life. He was completely immobile, so he couldn't do anything for himself. He had a G-tube. He had to be fed. He had to have breathing treatments. He had to have respiratory care. He required suctioning. He couldn't cough. So it's more airway clearance. I mean, obviously we all want to breathe, and so that is your primary focus, is making sure that his airway was always clear of secretions so that he could breathe easily. It was connected to a pulse oximeter the entire time. When we went out, we didn't put him on the pulse ox, because we could look at him and see if there was any issues. But pretty much that was our monitoring was to watch his oxygen saturations all the time, because then you'd know we'd get in trouble. But I think that was the biggest thing, is he depended on us to breathe, literally. Bathing, diapering, feeding, and then getting him up and getting him in his chair and enjoying the day as much as you could with him and taking him out and taking him for walks. He never went to school. His teachers came to the house. His therapist came to the house. So he always had somebody in the house, doing things with him in addition to his nurses. He had therapists that were in and out often. He was quite adored by everybody because he just had a great personality.

 

Emily Silverman 

Yeah, one of the parts of your story that moved me the most was when you talk about his eyes, the way that you were able to communicate with him through body language, eye contact. And, it sounds like these caregivers coming into the house were also charmed by him and his personality. In the story, you say it's a connection that can't really be explained. You have to feel it. But now I'm gonna ask you, best you can, can you explain what that communication was like for somebody who can't speak for themself. How did that personality shine through?

 

Ann Schrooten 

I think it's just paying attention, paying attention to the person in front of you, looking at them... you can't help but feel a connection. I'll never forget when one of his new teachers emailed me and said, "I really enjoy Jack's sense of humor." And I thought, "Wow, she gets it." This kid doesn't speak, but she gets he has a sense of humor. If you walk by someone who's nonverbal and don't really pay attention, you're not going to allow yourself to get to know them. But eyes are pretty powerful things. So if you spend some time, and I think people who work with nonverbal children understand that. So his teachers and therapists understood that you can still connect with children or even adults who can't speak through nonverbal ways of communication. And I often said, I always feel like I was carrying on a conversation with Jack, and not even realizing, there were no words. It's just over time, just the aura, just the connection, just being in the presence of this person, that if you pay attention, they can communicate with you. It's powerful. You got to have patience with them to allow them to connect to you.

 

Emily Silverman 

This may be difficult to put words to, but when you talk about Jack's sense of humor, is there an example that comes to mind or a way that you can help the audience understand what was the quality of his sense of humor? How did that come out?

 

Ann Schrooten 

His smile and he could laugh. I mean, you couldn't really hear him laugh, but he always enjoyed it. If you got hurt, I mean, to explain that, if you tripped over something, or you dropped something, or somehow, you went "Ouch!"... he enjoyed that. And I often wonder if it's because, and maybe it's because you overreact when you get hurt and you say "ouch," or you, you know, you're more expressive. And so he caught on to that. But then, you know, when we take pictures of him, like if we were taking a family picture, pictures of me and him, we'd say, "Smile, Jack," and then his dad would be taking the picture, making goofy faces or doing something. It always got a laugh out of them. So it's that sense that he understood. He was there. He was aware of what was going on. And so... it's his face would light up, and he would smile, and he... and he would laugh.

 

Emily Silverman 

So you said that once Jack turned 5, you had a sense that this wasn't something he was going to grow out of. And I'm curious, once you had that realization, how did you think about the future? And how did you talk to doctors? Or how did doctors talk to you about the future? Did they give you a ballpark sense of where Jack might be headed? Or did you Intuit where Jack might be headed? Or did you prefer not to think about it in those terms?

 

Ann Schrooten 

Well, I do remember once, when he had the second muscle biopsy, and we knew he had a form of a congenital muscular dystrophy, asking his neurologist, "How much time do you think he has?" And I remember her saying, she just threw out, 10 years. Now, keep in mind, there's no other Jack out there. The type of congenital muscular dystrophy he has is on a spectrum, and he would have been, he would be at the worst end of the spectrum. Not all of kids with his type of congenital muscular dystrophy would be on a vent or have a trach or even be immobile. And I will say, Jack was extremely healthy. He never was sick, and in the hospital. He had surgeries that come along with having a congenital muscular dystrophy like spinal fusion, and he had procedures every year to check his airway and his eyes, because his muscular dystrophy affected his eyes. But Jack died when he was 15, so I never thought about it. I'm caught up in just surviving life with him and three other kids. But then he started having issues with breathing and just unknown issues of pain, and he ended up in the hospital quite a bit, starting the last two years of his life. So that's when it triggered me to think, "Okay, this is now starting to impact his body." I mean, obviously, it had a major impact on his body, but when you have a child on life support, we don't really think about life ending because you're on life support, right? So it's really kind of hard to visualize, okay, what's that gonna look like? You're where people who get to end of life are and you're already there, and this is keeping you alive. More than anything, he just was in a lot of pain. He ended up having issues with his heart. His heart function was affected. His ejection fraction was affected. All that stuff's on. Okay, now it's starting to affect his heart. He's in a lot of pain, so my focus became: okay, now we're really talking about quality of life here. To step back a little, palliative care was not a thing when Jack was first born. He was born in 1998. When he started having a lot of these pain issues and issues that put him in the hospital, I switched from his primary pediatrician, who was wonderful, to a palliative care doctor who followed medically complex kids. That was my first introduction to palliative care. Like many people, I thought, "Oh, palliative care means I'm giving up. I've now decided we're not doing anything for Jack." That's not true. So I learned a little more about what palliative care is, which helped manage his pain more than anything else. They didn't mind writing scripts for pain. And that's when we started the discussions about, where are we going from here? What's he telling us? What's his body doing? So he's 13 at this point. So we had a good run for 13 years. Well, I didn't even worry about this so much. But once his body started feeling the impact of his disease, then we went to palliative care. He still ended up in the hospital lot. His pain was getting worse, and then ultimately, we had an admission to the emergency room because he was in a lot of pain. And the year prior, we had had a three week admission trying to figure out what was the problem. Why was he in pain? We really never found out an answer. So that's when I said, "Okay, we're not going to do this anymore." I'm not going to put him in the hospital and have people poke and prod. And it was in the ER, 4 months before he died that we put him on hospice. It all came down to: I didn't want my child to suffer. He didn't suffer the first 13 years of his life. He suffered the last 2, and that's when those decisions were made.

 

Emily Silverman 

I remember when we were developing the story, you said more than one time, that you were adamant that you didn't want this to be a sad story, or at least not only a sad story. That there was so much joy baked into this story, and also that Jack's death, in your mind, was not a bad death, that there was, you know, peace and so on and so forth. So tell us more about that.

 

Ann Schrooten 

The parent voice number one isn't heard often enough. There are 100s and 1000s of parents behind closed doors living this life, so it was important to share that story. But our child is more than their pain and their limitations and their death. There's so much joy and so much good that Jack brought into my life, every person he's touched life. He was a teacher to all of us. It was far from an awful life. It was a beautiful life.

 

Emily Silverman 

I'll just say that I learned a lot from your story as a doctor myself, I don't think I fully realized what a lot of families go through with care in the home, and this moment at the beginning of the story where you're bagging him, and I was just thinking, like, I actually, I don't think I fully realized that this is something that's happening in people's home—this level of care. And hearing you talk about his ejection fraction and his oxygen saturation, I think at one point I might have even said to you, like, "Are you a doctor? Are you a nurse?" And you were like, "No." So I definitely learned a lot from your perspective. One line in your story stuck with me, which was, as you're contemplating this reality that Jack will someday die, you say to yourself, "I'm Jack's mom. That's who I am. Who will I be without him?" And so I'm wondering, in the years since Jack died, when so much of your time and energy—physical, emotional—are spent caring for him, and then that goes away... how do you reimagine that identity, or where does that go, or how does that get translated?

 

Ann Schrooten 

It's very difficult, but I was very lucky, because shortly after Jack died, maybe 6, 7 months, one of Jack's doctors reached out to me and said, "We should write a book together." And that is what saved me. This book took 6 years to write, but it kept me connected to my community. It kept me connected to his doctors. It kept me being allowed to still say his name. So I had that gift. I have a network of friends. Many of them have lost children. Many of them are still living the life, but I could stay connected to them. Since the book has been out, over the last two years, we've given multiple Grand Rounds. So here I am talking about Jack again, and I'm still talking about him and the life he had. Then I got to tell that story on stage. So I'm lucky, because I've had so many opportunities, and said "yes" to these opportunities, which I would never have done before Jack died. I am a completely different person than I was before Jack died. And I asked myself "Why?" The answer is, because what's the worst thing that could happen by saying yes, and the worst thing in my life has already happened. I have nothing to fear. I have no fear anymore. So I've said yes to these amazing opportunities that have been presented, and I have literally been busy the last 10 years working on things because of what Jack taught me and the people he connected me with.

 

Emily Silverman 

Tell us about the book. That's so intriguing that it was Jack's doctor who reached out with the idea. Tell us about how you and the doctor came up with the idea for the book, and what the book is and the response to the book. Tell us about that project.

 

Ann Schrooten 

Well, the doctor that I wrote the book with was actually one of the intensivists who took care of Jack during the first year of his life. And when Jack was discharged, he needed someone to follow him on the ventilator. They told me, I needed to pick a pulmonologist to follow him outside the hospital. And I was struggling with choosing someone. They never forced it on me. And one day, this particular doctor came up and said, "Do you want me to manage Jack's ventilator?," keeping in mind that we all thought this was short-term. So that's our connection for the first couple of years before we moved to Arizona. He managed Jack's ventilator. He was an intensivist and an anesthesiologist. He knew vents. Then once we moved to Arizona, and there was a break in the doctor-patient relationship, we continued to stay in touch. He was an amazing support for me. And again, back in 1999/2000 doctors didn't give out emails. He did, and I used it, and he graciously would listen, answer questions, help out, make connections if I needed them. So we basically kept in touch over the course of Jack's life. He even came and spoke at Jack's funeral. He reached out to me and said, "We have learned so much from each other. Let's expand this. Let's write a book, but let's bring in other parent voices and other physician voices." So the book is a compilation of stories written by parents and stories written by physicians about interactions that they've had in the care of medically complex children. The themes that come out that we talk about in these stories are trust, compassion, communication and hope. There's 46 stories. After each story is actually a parent commentary that I wrote and a physician commentary that Dr. Barry Markovitz wrote, who was my co-editor. So we give our own independent perspective on the message of the story. So over the last two and a half years, we've given 11 Grand Rounds and spoken at 3 national pediatric conferences. It's teaching through storytelling.

 

Emily Silverman 

Hope, compassion, communication and trust. It sounds like those are really important themes that came out, but I'm wondering if you can expand a bit more, like based on your experience, collecting these stories, putting them in the book, commenting on them, speaking to the physician co-author, going around and giving Grand Rounds. What have you learned from that process? What have you taken away? Whether it's changes that need to happen in the healthcare system, or changes that need to happen culturally. What did that whole experience teach you that you didn't already know from your experience with Jack?

 

Ann Schrooten 

It taught me that doctors want to hear from parents. They want to hear our perspective. They appreciate hearing our perspective. Some of our stories are very positive encounters with physicians, and some of our stories are encounters that could have gone better. And I remember, after one Grand Round, someone told us,  "That was me." You know, it was about a resident. "That was me." I'm learning from this, it's just been so heartwarming to me.

 

Emily Silverman 

So, what's next for you? You seem like a very busy person.

 

Ann Schrooten 

Well, what's next for me is we're working on a documentary, and we're interviewing physicians and parents who wrote stories for the book. We don't know what the documentary is going to look like yet. We have our final interview, actually this coming weekend, but we've interviewed 3 families and 3 physicians. So we'll see what that looks like. We expect to finish filming by the end of the year, and I'm hoping it's out next year. So that's what's next. And you bring up a good point, because I keep thinking, what's going to happen when all this ends... like, I don't know, but I think it'll be okay. I've healed in a lot of ways because I've had these opportunities. I'm not going to fall apart. I am going to be okay.

 

Emily Silverman 

Well, we may have to have you back to talk about the documentary once that comes out. That's really exciting. And if people are interested in picking up the book, please do that. And we're just really grateful that you were willing to come and share a piece of the story with us on The Nocturnists' stage. It was really powerful. So, thank you so much.

 

Ann Schrooten 

Thank you.

 

Emily Silverman 

This episode of the nocturnists was produced, edited and mixed by Sam Osborn. Our executive producer is Ali Block. Our head of story development is Molly Rose Williams and Ashley Pettit is our program manager. The Nocturnists is made possible by the California Medical Association, a physician-led organization that works tirelessly to make sure that the doctor-patient relationship remains at the center of medicine. To learn more about the CMA, visit CMAdocs.org. The stories from Season 7 come from our live storytelling show produced with Bellevue Literary Review on the theme of "Taking Care." The show took place at the Leonard Nimoy Thalia Theater at Symphony Space in New York City, and was originally recorded by Amigo Studio. The show was made possible by The Physicians Foundation and First Responders First. The Nocturnists is also made possible by donations from listeners like you. Thank you so much for supporting our work in storytelling. If you enjoyed this episode, please subscribe to us on your favorite podcast app and give us a rating or review to help others find us. I'm your host, Emily Silverman, see you next week.

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