Premature babies grow up. It’s time to pay attention. [PODCAST]

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“Premature babies (a.k.a. preemies) and their families are increasingly becoming a powerful voice in society. Life in and after the neonatal intensive care unit (NICU) is like being dropped off a cliff. I support the preemie community from pregnancy to NICU to home and into the adult years because I had a preemie. My daughter’s story is a stunning example of a system gone wrong and why better outcomes research is key for these babies, their future and society as a whole.”

Deb Discenza is co-author of the Preemie Parent’s Survival Guide to the NICU and founder, PreemieWorld.

She shares her story and discusses her KevinMD article, “Premature babies grow up. It’s time to pay attention.”

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Transcript

Kevin Pho: 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. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/podcast. Today, we welcome Deb back on the show. I was talking offline with Deb, and we’re recording this literally two years to the day. She’s the co-author of The Preemie Parent’s Survival Guide to the NICU, and she’s the founder of PreemieWorld and Preemie Crystal Ball. Her KevinMD article is titled “Premature babies grow up. It’s time to pay attention.” Deb, welcome back to the show.

Deb Discenza: Thank you. I appreciate it, Kevin.

Kevin Pho: So for those who get a chance to listen to our first episode almost two years ago, just briefly share your story and journey to where you are today.

Deb Discenza: Absolutely. My story started 19 years ago. My daughter was born prematurely in 2003, 10 weeks early. She came home on medical equipment, she came home on medications, with specialists, the whole nine yards, and it was a wild ride, and it continued over the years. She’s now 19 years old. Her name is Becky.

Kevin Pho: All right. And you’re going to talk more about her story in your more recent KevinMD article, “Premature babies grow up. It’s time to pay attention.” I just wanted to start you off by reading you a small quote from it. You write, “My daughter’s story is a stunning example of a system gone wrong and why better outcomes research is key for these babies, their future, and society as a whole.” Now, for those of you who get a chance to read your article, just walk my audience through it and share the story of why you decided to write it.

Deb Discenza: Absolutely. My daughter came out of the NICU, the neonatal intensive care unit, with no access to early intervention. She didn’t qualify based on state guidelines. Remember that. We had her followed by the health department, the local health department, because it was an option on the discharge paperwork, and I jumped on it, and they followed her for a couple of years. We were lucky, because I really didn’t understand children’s development and all that, especially for a preterm infant, and I was really concerned.

So she ended up getting into early intervention at 18 months of age, because she was not walking and she was not talking. Fast forward: She got into early intervention and got kicked out of it because she was doing great, but then she ended up back in the next program, which is called Child Find, in preschool. She was followed there because she wasn’t talking in class.

Then, fast forward again, she was diagnosed with autism in kindergarten, because I was pushing. I said, “Something’s not right. Something’s not right.” No one was talking about this. No one ever mentioned autism or discussed it, not even in passing. No pediatrician, no specialist, nothing.

So we fast forward to second grade, and I said to a pediatrician, “We’re talking about ADHD.” And he said, “Oh, no, it’s fine. No big deal.” I’m like, “No, we are talking about ADHD.” Fast forward, we have a prescription for two medications, and we were off and running with that for years.

I had been talking about it since Becky was first walking, actually at 20 months of age. I literally was pushing. I was like, “What’s up with her walking gait?” She ended up getting diagnosed at 13 and a half years old with cerebral palsy with spasticity. I went through numerous specialists. Why does it take until she’s 13 and a half? And we’re not alone in this. Then I came to find out that she had a comorbidity of scoliosis. So the system failed us, but we’re not the only ones. We are not the only ones. We have to do better.

Kevin Pho: So tell us some of the major conditions that are associated with being born premature.

Deb Discenza: The research out there is really interesting. There are small studies with small sample sizes. They’ll have patients who are, and a lot of these are international cohorts, because they’re with international medicine, where medicine is free, so they get data from all that information. So essentially, they have 200 patients, or they may have 40 patients, and they come up with conclusions based on that.

I think the bigger problem is that 15 million babies are born prematurely worldwide every year. So 200 babies, 40 babies, as adults, that doesn’t add up. But there are risks. These small sample sizes show things like, as they get older, they can have many conditions related to dementia, heart disease, and other things that you would normally hear about as you get older, but they’re at higher risk. So I think it would behoove them to let their professionals know that they were born prematurely, and here’s the data behind it, because these professionals have no idea, including the pediatricians, by the way.

Kevin Pho: For those parents who have premature infants, and obviously they’re growing up, tell us what kind of tips and advice you have for them. What kind of questions should they be asking their health care professionals so they could be more proactive about these future conditions that may come up?

Deb Discenza: Absolutely. I talk to parents all the time, and I usually tell them that you should walk into the pediatrician’s office not just expecting to hear from them all the help that you need. You need to ask for it. You need to speak up, and you need to explain vocally what’s going on, because they hear complaints all day long, and they’re waiting for that parent who’s really vocal to speak up. So that’s the first step. And if you’re not getting what you need, move to a different professional.

Because honestly, the prematurity side of things drops off with neonatology. In pediatrics, the pediatricians do not do a NICU rotation anymore, and they haven’t done so for a while. So if that’s the case, you have a pediatrician who has no idea what premature infants are like. They just assume they’re now full-term infants, and they’re not.

Kevin Pho: So give us some stories and examples from some of the parents that you’ve talked to. I know that you’ve talked to many parents about their stories. Give us an example that really paints a picture, a typical scenario that a parent and their premature child may present with at a pediatrician’s office. What kind of conditions could they come up with? What are their stories like?

Deb Discenza: You know, it’s interesting. I get it across the board. I get parents with small children, and I get parents with adults, so there’s a bunch of them. I actually had a 36-year-old woman up in New York. She connected with me a while ago, and she said, “I’m really struggling. I was a micro preemie.” She was 36, and she is having to work backwards to get diagnosed with cerebral palsy, because this has been an issue since birth. Nobody picked up on it. Her parents didn’t do anything. She’s now struggling in life because of that and trying to get disability.

Imagine that. Imagine, at 36 years old, you know you have a disability, but the system is working against you. It’s horrible. It shouldn’t be the case. She’s really struggling in life. She needs those supports. You shouldn’t have to work backwards.

Think about those parents in that pediatrician’s office with that child. They’re saying, “Hey, the child’s having some trouble with walking. I notice there’s a limp there. The gait is off.” And the pediatrician goes, “Oh, no, it’s fine. Don’t worry about it.” Think about it: 36 years old. That just blows my mind.

And that’s not the only one I’ve heard. I’ve heard all sorts of things, different conditions like dystonia and mast cell activation disorder and all these other things popping up with these kids in their 20s, 30s, and 40s. I mean, I’m hearing about all these different things that are popping up now, and this is the real research. This is where we really need to dig in. It shouldn’t just be the children up to age two, and that’s when they catch up. There’s a lot more at risk.

Kevin Pho: So let’s say I’m a pediatrician or a family physician, and I’m seeing a child who was born prematurely. What are some signs and symptoms? What are some parts of the story that I should be on the lookout for that would make me think this person may need more support?

Deb Discenza: I would say, first and foremost, get the discharge paperwork, which they should get. If they can’t, they need to try and get it. But the parent is going to be the best form of information. They’re the ones who are really around that child all the time, and even in the NICU, they’re at the bedside 24/7 if they can be. So they know that baby best, and that mother knew that baby before anyone else.

So I always say that Mom is an expert on her child, so listen to her for once, and give her the benefit of the doubt that if something’s wrong, she’s really saying something’s wrong. Rarely do I think she’s wrong. I think she’s right. And I always encourage parents to speak up vocally. So if that parent is vocal, do something, even if it’s just to refer them to a specialist. Do something. Don’t just ignore it. Don’t just pooh-pooh it away, because you’re ignoring that parent’s expertise. She’s depending on your expertise, so work together as partners.

Kevin Pho: So let’s say the parent isn’t vocal and doesn’t speak up to share that story. Are there any specific questions that health care professionals should be asking that parent that could perhaps uncover anything that may be a complication of being born prematurely?

Deb Discenza: I would say they should definitely ask about the child’s history. Ask about specific issues with development. Ask if they remember the time that the child learned to talk, when the child learned to walk. Obviously, they’re seeing the child in their practice, and they’re watching all this, but there’s a history there, and that history has changed a little bit. So with that mother, trying to tease out that information is really important.

How’s daycare going? How is preschool going? Is there interaction with friends, whatever age that may be? Is the baby or the child playing with others? Is the child looking you in the eye? Is the child looking other people in the eye? These are specific questions, enough to start teasing out those issues, things like autism in terms of social issues, and again, also ADHD. But also, how’s the child doing with running on the playground, or trying to climb, or any of those other things? That can make a big difference.

And also, do they feel like there are other issues, like with feedings? A lot of preterm infants end up with picky eating. We had the same thing with my daughter, and we thought all along it had to do with autism. And while it did, there was really more of a sensory processing disorder involved in that. So I ended up getting her feeding therapy at 12 years old. This is what parents do. We’re trying to get help. We’re trying to figure it out, and it’s a maze. So I think the pediatrician, again, working with the parent to tease out that information, could really save them.

I think also, on that note, asking the mother how they’re doing, I think that is really key, because there is a huge amount of evidence that postpartum depression can actually affect the child’s development. When I talk to parents who are worried about how their child’s going to turn out, I tell them right then and there that they absolutely should check in on their mental health, because it can actually dramatically affect that child’s outcome. Most parents are sitting there saying, “I’m hesitant, because I want to focus on the baby.” I’m like, “Guess what? It’s important for you to have self-care, and here’s why: It’ll help your baby, and it’ll help you.” So they listen, and they go do it, which is great.

Kevin Pho: I just want to be clear. A lot of the questions that you suggested pediatricians ask, are they not already routinely being asked during a typical well-child visit? Or does a pediatrician just need to be more alert to ask those questions because that child was born prematurely?

Deb Discenza: I believe that they ask those questions, but oftentimes they’re rushing through appointments, and they’ve got so many patients to deal with and so much on their mind that oftentimes they will ignore the fact that there should be a blaring light that says “preterm infant,” so they know to actually dive deeper and really spend time with that parent, with that patient family. Because yeah, they need that extra attention. They really do.

Any extra time they can devote to really teasing out that information would be key, because the parent is likely to not talk about it first thing. If they don’t bring it up, they’re not going to talk about it first thing, and you’ve got to give them a little time to get comfortable and talk about it and then bring up other issues. It’s like the patient coming in, having the appointment, and at the very end, “Oh, by the way, I need three prescriptions.” That kind of thing. They need that time.

Kevin Pho: Earlier in our conversation, you mentioned resources that were available for parents with children who were born prematurely. What are some resources that they should know about and ask for?

Deb Discenza: Oh, there are so many resources. There are tons of things from the March of Dimes. There’s all sorts of information at NICU Parent Network, which is a wonderful house of members who are support groups across the country and internationally. And I have the book called The Preemie Parent’s Survival Guide to the NICU. That was the book I really wanted. I loved all the books out there, but I wanted something friendly and colorful and supportive, providing lots of resources in the book, throughout the book. So it’s been really great to see that take off.

Kevin Pho: We’re talking to Deb Discenza. She’s the co-author of The Preemie Parent’s Survival Guide to the NICU. We’re talking about her KevinMD article, “Premature babies grow up. It’s time to pay attention.” Deb, what are some of your take-home messages that you want to leave with the KevinMD audience?

Deb Discenza: Absolutely. Patient families, be vocal. Pediatric professionals, even adult professionals, ask questions. Tease it out. It’s important. It means something. And as far as families and professionals and researchers go, join Preemie Crystal Ball. You can go to Crystal Ball Health, sign up, and join the movement. It’s that simple. Thank you.

Kevin Pho: Yeah, thanks again for coming back on the show, sharing your time and insight. Appreciate it.

Deb Discenza: Thank you.

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