Transcription:
Raising a Child with HLHS

John Lantos MD (Host):  Welcome back everybody. This is John Lantos with the Children's Mercy Bioethics Pediatric Ethics podcast, coming to you from Children's Mercy Hospital and our Bioethics Center in Kansas City. We discuss issues in pediatrics, child health, health policy, issues that raise interesting ethical issues. We'd like to talk to doctors, nurses, any child health professional. We talk to parents, we talk to kids who have chronic disease and we're thrilled today to have Dr. Wendy Hind joining us. Wendy Hind is the parent of a child who was born with a congenital heart condition, and this led her on a life transforming journey that we're going to talk about today. Thanks so much for joining us, Wendy.

Wendy Hind, PhD, JD (Guest): Thank you for having me, Dr. Lantos. It's a privilege to be here and to be with your audience today, to share some of my story.

Host: And because your story is so unique, I thought we might start by just having you tell the world, about your journey with your son and how that led you, to the Tiny Poetry Project and the work you're doing now in narrative medicine.

Dr. Hind: That would be great. I'd love to. And if you have anything along the way, you just let me know. I had a regular first pregnancy with our daughter and everything was quote, perfectly normal, very easy pregnancy and the perfectly healthy first child. So, when we were pregnant with our second child, our son, we went into have the triple screen done. And there were some markers that were off on the triple screen. So, we decided to go ahead and investigate those further. And upon further investigation, there was actually nothing wrong with the things that you would normally be looking for in a triple screen. But the tech happened to look upon the heart and see something that didn't quite look right. So, we were immediately sent to a pediatric cardiologist and in my vernacular that didn't even exist at that time. Didn't even know that was a thing.

Host: What year was this?

Dr. Hind: That was in 1999. So, I was in my early thirties at the time. I was a lawyer. I was working for the Supreme Court in Nebraska. We were doing our thing and we go to the pediatric cardiologist and she informs us that the heart is not developing correctly. And not just that, that this particular condition that she was concerned about our unborn child having, was actually extremely, extremely, dangerous and didn't have the best outcomes necessarily at that point.

Host: So, can I take you back to that conversation? I mean, what did it feel like sitting in the pediatric cardiologists office? She's looking at the ultrasound, I assume?

Dr. Hind: She's looking at the ultrasound as she's talking to us. I'm lying on the table literally. And I see the concern on her face. And she was not one to mince words to tell you the truth. She was very matter of fact about if you choose to continue with this pregnancy, hence ethical questions come in here. If you choose to continue with this pregnancy, it will be a rollercoaster. And this is 20 years ago.

Host: How many weeks of gestation are you do you remember?

Dr. Hind: So when does that triple screen? I'm trying to think. I know that it was a very early. They weren't even a hundred percent for sure about the diagnoses yet of being a single ventricle because the heart was that early in development, but it was within a few more weeks where that was confirmed. We knew we needed more information. And so we met with a pediatric thoracic surgeon a couple of weeks later where it was confirmed and I'll never forget looking down at the pediatric thoracic surgeon's feet and he was in scrubs and he was wearing purple Birkenstock clogs and there was a drop of blood on the toe of his Birkenstock.

And I remember looking up and saying on a scale of one to 10, where are we at here? And he said you're about an eight or a nine. And we actually asked him, what would you do? Of course, that was a very difficult question for him to ask, which he answered very diplomatically. We did a little more research. We talked to some more parents and we made the decision to have William and it has been a roller coaster. There's no doubt about it. It has been a roller coaster, but when William hasn't been sick, we decided we were going to do everything we can to be as living in the moment as possible. And to this day, William, he's undergone 12 surgeries because he not only had HLHS, hypoplastic left heart syndrome, he also has heterotaxy syndrome. He's had a Ladd's procedure done. He's had more abdominal issues actually than heart issues. He's at least at 12 plus surgeries to date. The last one being within the last year. Lots of scar tissue issues. Having said all of that, William and I speak today with his grace and his knowledge, and his total acceptance and he's totally for all of the promotion of his story. He's a 20 year old junior in college right now doing remarkably well.

He wants to work for FEMA. He wants to be in emergency management, disaster relief. As William says, he wants to help people on their worst day. And I think that amazing ability to feel so deeply and care so much about humanity has come through the remarkable experiences and pain that he has had to endure.

Host: This led you to start exploring the whole field of narrative medicine, correct?

Dr. Hind: That's right. About eight years ago, we picked William up from a heart camp and his younger sister at that time was at the quote normal kids camp across the river basically. And we picked them both up and we're driving out of this camp and he says gosh, there was this kid at my camp and he was able to do a Make-A-Wish, but boy my heart's not that bad. I'm probably not eligible for something like that. And it was a huge aha moment. My husband and I looked at each other and we're both later talking how we were thinking, oh my gosh, that kid's heart condition wasn't even close to William.

And he's sitting here thinking I'm not so bad. I'm not eligible for a wish. He is eligible. He was eligible. We did take a wish trip. His wish was to go to Sydney, Australia. But that moment of actually realizing how serious his condition really, really was and that we were actually a Make-A-Wish family; I wrote a poem and I don't know where it came from, John. I hadn't written poetry since fifth grade, like a haiku or something. I had recently been to the Iowa writers' workshop where I started writing more. And this poem came out of me and thanks to editor Deidre Neelan at the SUNY Medical School and the Healing Muse, she published the poem and later read it on public radio. And it was from that point forward that I started using narrative medicine in my own life as a way of healing and understanding and expressing my story towards those in the medical community to help not just myself, but maybe help them understand the point of view of a caregiver for a child with a serious chronic condition.

Host: Would you happen to have that first poem available now, could you read it?

Dr. Hind: I do. I do have it here and I'd love to read it. This was published by the Healing Muse in the fall of 2014. And this was my first poem written and published called My Tattoos.

Every time I get a new mark, I stare at my body. I try to cover it. I don't delight in my new facade. My markings are not colorful and romantic. They are not detailed and poetic yet, people still stare. I received my first marking when I was very young. I have many markings now, some are big and some are small. Some have been done on top of the one before. Each one is characterized by fear, anxiety, and pain. I hate the needle, but I keep getting marked.

I shake when it comes near me. I always direct the person holding it to count to three before they start, they promise they will. Sometimes they break their promise. My skin hasn't been marked with pigment, but with scars, the artists who marked my body use scalpels, they're skilled. They are experts. They have perfected their art. Sometimes they remember me and sometimes they don't. I always remember them. When I grow up, I may become the one that marks others. When someone wants me to count to three, I will. I will be gentle and kind. I will always understand their fear, anxiety, and pain. I will always remember them. A tattoo has been referred to as a deviant sign of something that is absent or invisible. Absent is my spleen, gallbladder, two thirds of my colon and half of my heart. Invisible are my feelings masked by my young smile. My tattoos lie outside of social norms, but I didn't initiate them. Are my tattoos an act of deviance by God? I don't want any more tattoos, but I am not done being marked.

And at the time that I wrote that, William was 12 years old.

Host: It's interesting to me that you chose to write in his voice and not yours.

Dr. Hind: Yeah. And that is something I actually struggle with. And what's interesting to me now this many years later is actually understanding how much of my fear, anxiety and pain and my lack of control is actually in that poem. And at that age, I think that I sort of was obviously projecting William's feelings in a way that I felt like he couldn't express. And it came through me in this understanding that there was nothing on his body that he could control. And all he asked for was to please count to three before you poke me, before you invade my body, before you touch me in ways that I don't want to be touched and to have that small little act of kindness be violated, that small request to not be respected was very damaging at that point for him. Because he needed to trust implicitly that what they were always going to do was to help him and not hurt him in any way that they didn't have to. And to not appreciate and validate that one small request was very, very difficult. And I think that's where it really spurred me to get out this understanding, which is the premise of narrative medicine is listening and attention to the story.

Host: Now do you feel that people made promises to you that they didn't keep?

Dr. Hind: I feel like they made promises to William and not at all in the grand scheme of things, in terms of, I think people were very honest with us, the medical profession about what they could and couldn't do and what they knew and what they didn't know at the time. I think that this poem really just sprang from that really, what seemed like a very small request for a 12 year old to ask for. And for that trust to be violated, not only hurt him, but hurt me and I could see how that impacted then every time we go in for a blood draw, every time we would go in for any procedure. His stress was heightened just that much more wondering if they're going to trust him and listen to him and abide by this small request. It created for a lot of years, a lot of extra stress whenever we'd go for blood draws.

Host: What's been the reception of your, poetry? And are you writing fiction as well? Or is it mostly poems?

Dr. Hind: No, mostly poems and then some essays on medical issues and children's advocacy, pediatric advocacy in the health care space. It's been great. I actually have my first chat book of poetry coming out in two weeks. It's called My Tattoos. And this poem is, obviously one of what highlights in that collection, but it is a collection of health poems. And then I've started what I'm calling the Tiny Poetry Project, which is every week I put out two kind of micro poems on health and wellness issues on Instagram and Facebook under the Tiny Poetry Project, as just a way of really not only expressing myself, but connecting with other caregivers, other patients, anyone else who is experiencing medical issues in their life.

Host: Do other people send their poetry in?

Dr. Hind: No, at this point, I'm just putting mine out there. I've thought about that, but right now I'm just putting out very micro poems, probably take about 30 seconds to read online. Getting actually just great feedback about it. And it's so fun to have people start following me, who I don't even know or commenting on a poem that touched them somewhere in the world. I just did a podcast in London a couple of weeks ago, and that was a fabulous way of spreading the power of narrative medicine.

Host: And people who want to follow that, that's #tinypoetryproject, one word?

Dr. Hind: That's correct. And it's an Instagram Facebook. And then, my website is tinypoetryproject.com where I'm starting to do some more and more workshops working with not only doctors, but patients and caregivers on writing poetry and getting their feelings out and helping them understand what they're doing.

Host: Tell us a little bit about how you do those workshops.

Dr. Hind: They're generally in the same format as one would do any poetry workshop, which is a series of prompts, a series of readings, and then a series of reflection and writing and then sharing. And it's very, very powerful. I think it's always surprising to people what comes out of those and what comes out of themselves.

Host: You're doing those at medical schools, at hospitals?

Dr. Hind: Right now, it's been primarily not affiliated with a hospital. So, it's been with some doctors and with some care providers. John there's a lot of hospitals, which is fabulous, they're starting to do this actually in their hospitals. Akron Children's has a individual who's full-time doing narrative medicine with staff, caregivers and patients. Children's Advocate in Chicago has a program. Texas Children's has a program. Johns Hopkins is doing some things. I really believe that this should be something that's a part, at least once a month workshop offering ability to drop in. There's all sorts of methods and ways to do it. But I, really think, especially given the last year and a half with the stress that the medical community has been under; that this kind of thing should be in every hospital and every pediatric setting.

Host: It really has been a powerful healing force for a lot of people. And it sounds like it certainly has for you. So, thanks so much for talking to us about your journey and about the projects that you've started to get your work out there. And to help doctors and nurses who want to explore narrative medicine and poetry writing to get their voices out there. I'm talking with, Wendy Hind, who's a parent of a child with a life-threatening congenital heart condition and the founder of the Tiny Poetry Project, #tinypoetryproject. I'm John Lantos coming to you from the Children's Mercy Hospital Bioethics Center in Kansas City, Missouri on the Pediatric Ethics Podcast. Thanks for listening.