Thank you pediatric medical professionals [PODCAST]

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“As the mother of a child born with hypoplastic left heart syndrome, besides going through four open-heart surgeries and coding, my son has also had eight abdominal surgeries, including a Ladd’s procedure and resection of his colon. William also functions without his appendix, spleen, and gall bladder. In addition to every kind of therapy imaginable, he has had to endure pamidronate infusions, daily shots, G-tube feedings, and TPN. Who knows how many times he’s been X-rayed and poked by a needle. It’s been a roller coaster, but he wouldn’t be here without you: all of you.”

Wendy Hind is a health care consultant.

She shares her story and discusses her KevinMD article, “Thank you pediatric medical professionals, as we fondly bid you adieu.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Wendy Hind. She is a policy consultant, and she wrote the KevinMD article “Thank you pediatric medical professionals, as we fondly bid you adieu.” Wendy, welcome to the show.

Wendy Hind: Thanks. It’s great to be here, Kevin.

Kevin Pho: We’ll get into the article in a little bit, but first off, can you share your story and your journey to where you are today?

Wendy Hind: You know, my story begins with a background in law and a background as a professor. And suddenly, after we have our first child, our second child is born with this heart condition that, of course, we had never heard of: hypoplastic left heart syndrome. When we were asked about the severity of this, the cardiologist told us it was about a 9 out of 10 on a scale of health issues. So, young new parents, very afraid, entering a world that was entirely new to us, entirely foreign to us. That’s where we began.

And that was really the impetus of this article: 20 years later, we have had a roller coaster ride, but we are eternally grateful to the medical profession. And when I say medical profession, I mean everyone involved in our son William’s care, from prenatal visits all the way through to long, extended hospital stays, where we couldn’t thank those people cleaning our room and providing us food. That’s the continuum of care that I’m grateful for.

Kevin Pho: Let’s get into that article, and I certainly want to hear more details about that story and your journey. So when you first received that diagnosis, and, like you said, you’re new parents now, what kind of support services did you have at that time, and where could you turn to for support?

Wendy Hind: That’s a great question. So I think that you’re brand new to that; you don’t know those support systems. So it’s essential that hospitals and the community of caregivers let you know what is available. And frankly, we learned along the way. I know I’m fortunate. I am a very strong advocate for myself and for my children, and I had that ability to ask a lot of questions. Even so, there were holes, there were gaps, that we just pushed continually through to find.

So I can’t say enough, that need to make sure that people really understand all of the services that are available. Because when you’re dealing with a complex kid, like William still is today, you’re not just talking about going in, even for surgeries, which are, you know, just more than a parent can even imagine, open-heart surgery or abdominal surgeries. You know, we’ve experienced over 12 surgeries with William. So it’s more of things once you leave the hospital. There are things like speech therapy, fine motor therapy, gross motor therapies. I mean, you name the therapy, we needed it, we used it.

So understanding those services that are available, understanding insurance, it’s such a complex world. And your world is already falling apart, or you feel that way, because the most valuable thing for every parent is their child. And when their child’s health is in jeopardy, it’s very, very difficult to also manage all of those other components that are needed for successful recovery and for successful entry into, whether it’s school, social situations, you name it.

Kevin Pho: Can you share a little bit more about the condition that your son had, and maybe a little bit more about the medical team over the years that had been caring for him?

Wendy Hind: Yeah. So he was born, like I said, with hypoplastic left heart syndrome. His left ventricle was undeveloped. He went through the Norwood procedure, and very sadly, Dr. Norwood just passed away last month. I never got to meet the man, never got to talk to the man, yet he is, you know, near and dear to us, like so many kids that have benefited from his breakthrough surgery.

Having said that, most kids aren’t as lucky or as fortunate as our son, because William is now a sophomore in college. He’s thriving, he’s doing well, and we are incredibly fortunate. His team consists of everything from infectious disease, to cardiologists, to, of course, his thoracic surgeon, to intensivists, to hospitalists. You know, the range and the spectrum of specialists is mind-blowing.

What’s critical, and what is often difficult, I know, for hospitals to do, but they’ve really got to work at it, is when you have a complex kid, that those specialists are working as a team, because, you know, that body is a system. And so having a team in place is so critical to their success and their health. And then once you get out of the hospital environment, that team of teachers, that team of counselors and support specialists, maybe in the mental health area, in the education setting, are equally important for the child’s success.

Kevin Pho: I think what you said was so right. It’s so important for health care clinicians to work as a team, because we’re also siloed; we’re also specialized. You know, we have your generalists, and then you have your proceduralists, and then you have your specialists, and it’s important to have that team-first aspect that’s often lost today. So share a little bit of detail. How did your medical team work together? How did it communicate? And was there any one person who was leading the team that was comprised of so many different specialists?

Wendy Hind: To be honest, it really took a lot of advocacy on our part. I know the team, I know there were people getting together, but we weren’t always in the loop of that. We had a fabulous cardiologist and a fabulous general surgeon that took a keen interest in us, and we felt like all of those physicians and their team of nurses really were on our, you know. It’s important to have that feeling that someone’s on your side, that someone’s looking out for you, that someone’s pushing for results. Because again, with complex kids, it’s easy to say, “Well, this isn’t an abdominal issue,” or “This isn’t a heart issue,” and so then it’s kind of passed on, versus saying, “You know what, when a kid’s this complex, that system is connected.” And so to say that it’s not this, that can feel, as a parent, a bit like passing the buck, a bit patronizing.

This is, you know, one of my messages to get out there: Listen, listen to the parent or caregiver, because they’re not here for fun. And they know you care. They know you care as a physician. So when a parent and child come into that pediatric specialist office, you know that’s not a well-child check. So we’re generally scared, we’re generally frightened, and something’s going on. And so what we’re really after is that understanding, that really strong listening component.

No, we know you’re stretched for time. We know that every 15 minutes you’re supposed to be in another room. But when we’re in there, this is our child, this is our child’s health, and we’re in there because we know that something is really, really not right. So that team component, even if it’s not a heart issue or it’s not an abdominal issue, having that level of care to say, “You know what, we’re going to figure this out,” or “We’ll talk to other members of his team to figure this out,” is really, really reassuring for parents.

Kevin Pho: You had mentioned that at points during the journey, it required some advocacy on your part. What did that look like? Give an example of an instance of that.

Wendy Hind: Well, you know, again, I feel like I have this added benefit: I was trained as an advocate, you know, as I was trained as a lawyer. I never wanted that to be used in a way that wasn’t healthy or productive for our child. You know, I feel for parents who don’t feel like they have a voice or don’t feel like they can question the authority of a physician. Because most people, me included, can be very intimidated by the medical professionals, because your vernacular, your whole world, is completely foreign to us. And yet we’re coming to you at the most vulnerable time in our life, when our health or our child’s health is at risk. So it’s a very difficult power imbalance that you can feel.

So knowing that you, as physicians, care, that you’ve gone into this because you want to heal the mind and body, if we can remember that, I think that can help us stand up for ourselves and help to push back a little bit when we’re feeling like we’re not getting the answers we need, or we still don’t understand maybe even what you’ve just said. So having that power to advocate for yourself or your child in a respectful manner is just, I think, a huge benefit, not only for the patient but also for the physician, knowing that, “OK, I’m not as clear as I need to be,” or “We need to look further,” or however that may go.

Kevin Pho: We’re talking to Wendy Hind. She is a policy consultant, and she wrote the KevinMD article “Thank you pediatric medical professionals, as we fondly bid you adieu.” Wendy, for other patients who unfortunately may be going through similar circumstances like your journey, you mentioned advocacy, of course, as one tip that you give, but are there any other tips that you could share with these other families who may be undergoing similar journeys, that you’ve learned from your own journey?

Wendy Hind: Yeah. You know, there are a lot of networks out there. There are a lot of blogs; there are a lot of groups that can help. There’s heart, you know; for kids like ours, there are lots of heart connection groups. Those can be really good places to get information, to get help, even to just know you’re not alone in this journey, because a lot of this can feel like you’re very much on your own. Of course, your experience is unique, but just to know that it is a shared experience can be helpful.

This article came out of an impetus of, we are transitioning now out of what I would say was a fairly safe cocoon environment, where in the pediatric world you’re guided, you’re ushered, you feel like you’re being protected a little bit along your journey. And going now into this adult field has been a little bit daunting, a little bit scary, because we feel like we’re leaving this comfort of the pediatric world behind. And now, of course, as a parent, William is needing to advocate for himself. Suddenly legal issues come into play, where I can’t just call up on the phone and reorder his meds. I can’t ask what the results of a test were. And yet we all know that 18- to 22-year-olds are on a journey of growth. They’re learning, but they’re not there yet in terms of understanding and knowing how to take care of themselves, let alone the world of insurance. I mean, that’s a whole other podcast for us, Kevin.

And so we’re embarking on new territory here. And I just really wanted to make sure that the universal theme of pediatric health care wasn’t just, of course, it was written, in my head, with numerous people in mind, but it’s this universal thing that I wanted out there, that I wanted to know, that we’re so grateful for those of you in that pediatric world who help kids and families along this very, very scary journey.

Kevin Pho: And for those clinicians on this podcast who may be listening to your story now, what is your advice and tips that you can share with us in terms of how we can do our jobs better?

Wendy Hind: One of my biggest tips, I think, would just be: Remember that this is our child; this is our health. We often forget that you’re going from room to room to room, because all we know, the minute you come in our room, is that it’s our health, that issue. And so we just really, really want to be heard. We want to be listened to. We want to make sure that you’re not feeling rushed with us. I think that’s very, very hard. We know the demands that are on the physicians are incredible, but for those 15 minutes, for that 30 minutes, it’s important that you are in the room that you’re in and listening to those people that are in there, and not because they want to be.

Kevin Pho: And if there’s something that you know now that you wish you knew back before your journey started, what would that be?

Wendy Hind: I think it goes back to advocacy, Kevin. I think that, again, it is just so important that you feel empowered to advocate for yourself or your child, and to not stop when you’re not getting the answers that you feel that you need. When you know in your gut, when you know intuitively, that something is not right, that you don’t stop. And you can do it politely, you can do it with kindness, you can do it with respect, but keep pushing if you need to. And if you’re not getting answers one place, go for a second opinion, go for a third opinion. Do what you need to do.

Kevin Pho: And my final question: What’s your take-home message you want to leave with the KevinMD audience?

Wendy Hind: I want to leave with, again, a huge, huge thank you to all of those physicians, all of those health care professionals, all those specialists, all those people that clean the rooms at children’s hospitals, that provide food for us when we’re in there with our children. Thank you so much for your kindness, for the love that you showed us, for caring, and for deciding that your life’s work was going to be to help children and families.

Kevin Pho: Wendy, thank you so much for sharing your story, time, and insight, and thanks again for being on the show.

Wendy Hind: Thank you so much, Kevin.

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