COVID-19 is rattling the nerves of preemie parents [PODCAST]

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“With COVID-19, all of those memories have come flooding back. It is as if I am back in the NICU staring at that tiny infant and worried that she would get sick. Only now I have to pull myself out of that horrific daydream and stare at my teenager and pray that she will get through this. I am not alone in this. Parents of premature babies worldwide and some of whom had children on the very edge of viability are absolutely terrified. I also worry about the parents in the NICU now. I worry about the preemies that are now teens, young adults, adults, and in the elderly years. Each of them has at least one underlying health condition that can turn COVID-19 into a severe and yes, fatal case.

To health responders and the health care professionals on the front end: I hear you on the seriousness of this illness. Thank you for guiding us on the challenges with COVID-19. You have us parents of vulnerable children and your former tiny patients backing up your concerns completely. To the general public heeding that concern to #stayhome and do the right thing by the young and the old and the immunocompromised, again, we are grateful. You are all our heroes.”

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, “COVID-19 is rattling the nerves of preemie parents everywhere.”

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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, and 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 Deb Discenza. She is the co-author of the Preemie Parent’s Survival Guide to the NICU and founder of PreemieWorld. She wrote the KevinMD article “COVID-19 is rattling the nerves of preemie parents everywhere.” Deb, welcome to the show.

Deb Discenza: Thank you. Thank you for having me, Kevin.

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

Deb Discenza: Sure. My journey started a long time ago in technology, with a background in writing and editing. How did I end up here? I had a premature baby in 2003. She was born at 2 pounds, 15 and a half ounces, she spent 38 days in the NICU, and she came home on medical equipment. We’ve spent the last 17 years, she’s almost 17, working through a lot of challenges. It’s been quite a journey, and very educational. I’ve learned a lot. I’ve learned a lot about advocating for my daughter that I’m passing on to parents and professionals, which is really important.

I actually started PreemieWorld after I created a preemie magazine back in 2005, and that ran for two and a half years. That magazine was free and went nationwide, and we had partnerships with the March of Dimes and all that stuff, so it was a wonderfully received magazine. PreemieWorld goes beyond that. We created the Preemie Parent’s Survival Guide to the NICU, and we have a website filled with information, lots of free stuff, lots of freebies, and things for parents and professionals, which is amazing. So it’s what I wanted it to be. I wanted it to be a sort of collective of information to help people through that journey.

Along the way, I created Preemie Crystal Ball under the name Crystal Ball Health, and that is a portal for information on preemies as they go from birth into adulthood. It can be self-reported, so we can get better data on outcomes, because the outcomes data is really sketchy still, even 40-plus years out, 50 years out. I think we can do a lot better, and we can do better drug development as a result.

Beyond that, with everything going on with the Black Lives Matter movement, I actually co-founded a nonprofit called the Alliance for Black NICU Families. Our whole goal with that is to have a two-pronged approach: help families in the Black community through their NICU journey and help better their outcomes in a variety of ways. Beyond that, we are also helping the professional sector by mandating annual racial and health equity education.

Kevin Pho: We have a lot of physicians, clinicians, and health care administrators who listen to this podcast. What would you say is your number one tip that you could share with them to help improve the care of preemies and help preemie parents everywhere?

Deb Discenza: Number one is to teach a parent to be an advocate for their child. It will help not only that baby, but then, ongoing, it’ll help that parent, that family, and it’ll help the NICU team, or the pediatric team, whoever they’re working with, because really, an advocate parent is the one that’s watching everything, and an advocate parent is one that speaks up and has your back. If you show you have trust in them, they’ll have trust in you, and in that moment when you really need to make a quick decision, they’re not going to question it. They’re going to trust you.

Kevin Pho: Excellent. So let’s get into your KevinMD article, “COVID-19 is rattling the nerves of preemie parents everywhere.” Now, for those who haven’t read your article, can you walk my audience through it and share the story of why you decided to write it?

Deb Discenza: Certainly. When COVID started coming through, I noticed a lot of the families I was supporting, and even I, were feeling it. My daughter’s almost 17 years old. That sense of PTSD, the worries about the immune system, the worries about hand washing, and all those things that we worry about with COVID-19: Parents have already been there. We’ve already walked that journey, and many of us still walk it in many ways. I still have a hand sanitizer bottle at my front door. That tells you that that journey has not totally ended for us, and now I have added Lysol wipes and other things to that because of COVID-19.

It really rattles the nerves of parents. It really sends them down a path of worrying how to protect their child. They’re back in that day in the NICU where they’re fearful of what could happen. Their kids are still immunocompromised, so it could be a real challenge.

Kevin Pho: Now, one of the things that you mentioned earlier was to encourage preemie parents to advocate for their children. What are some specific ways we can do that?

Deb Discenza: Sit down with the parent. If they are one of those parents that decided to Google everything, print everything out, and bring it to the hospital or the appointment, sit down with them and go through it. I know that takes a little extra time. Be mindful of that time with the parent, obviously. Tell them, “We have so much time, but let’s go through this real quick.” That parent will learn to trust you. They’ll learn to understand your expertise, and I think that’s a missing link. The parents will see the diplomas on the wall of the office or the hospital, but they really don’t understand your specialty. They don’t know your knowledge.

So while you’re doing that, you’re showing you have knowledge. Respect their knowledge too. Make it a partnership, and a true partnership can have great benefits for that child, that baby, and for everyone involved.

Kevin Pho: Tell me something that you’ve been curious about. I know you talked about some of your projects earlier.

Deb Discenza: So, the Black Lives Matter movement. I talked about this in meetings, coalitions, and conferences for years and said that we are not the NICU, we are not the NICU. The NICU is a very frustrating place for many people. Not everybody has a great experience, in pediatrics and everything else. I explained that we have folks that are really struggling and that we need to do better to help them, and nothing ever came of that. So that’s how this sort of came about. It wasn’t just George Floyd dying. It wasn’t just Breonna Taylor. It wasn’t some of these other people who’ve been through horrific things, but I support that. I support the Black Lives Matter movement.

But honestly, this has been going on for a very long time in so many different areas. Systemic racism is in health care, and we have to be really honest about that and make sure that we’re taking steps to eradicate it, because it doesn’t just overtly show itself in a room in front of a ton of people. It can be in the corner. It can be quietly behind a door. It can be insidious. It can make things very uncomfortable for somebody in the most slight way, and they didn’t even realize that they were probably doing it. I think we need to really change that partnership and create that trust again. It’s time to do that because health care. That’s why I think we are seeing COVID-19 patients in the Black community, why we’re seeing such a significant rise, and in the Latino community too.

Kevin Pho: We’re talking to Deb Discenza. She is the co-author of the Preemie Parent’s Survival Guide to the NICU and is the founder of PreemieWorld. She wrote the KevinMD article “COVID-19 is rattling the nerves of preemie parents everywhere.” Deb, we often don’t hear from the perspective of preemie parents. What are some of the other issues that you’re hearing that they’re concerned about?

Deb Discenza: Long-term outcomes, definitely, especially when doctors tell them at the bedside in the NICU, “We may never know. We have no idea. We have no idea why,” or, “We don’t know what the outcome is for your child.” Or they’re given a dire prognosis that doesn’t equal what it really could be. They just give them a blanket statement: “Your child’s going to be handicapped. Your child’s going to have all these issues.” The parents have to make a decision based on what this doctor is saying, and it’s hard. It’s hard for parents to make a decision to let go of their child based on these things, because there’s no real statistical evidence behind it. There are not enough sample sizes in those studies.

So for me, that’s a big problem. We need to increase the sample sizes, we need to increase the research, and that starts with the patients, the patients’ families, doing self-reporting. So that’s a big deal with me.

Another area, in terms of Black Lives Matter, is that we need to work on the information getting to the families, because they’re not getting the information. That is really disturbing to me as a person that provides educational materials and provides resources: to hear that families are not getting the information when a Caucasian family next to them is getting all the information and they’re getting nothing. To me, that is disgusting, that we would allow that to happen in this day and age. It’s not fair. It’s not right.

Kevin Pho: And my final question: Do you have a take-home message that you want to share with the KevinMD audience?

Deb Discenza: It’s all about partnering with the families, with the patient’s family. That’s the key to your success, if you can have empathy, and if you can sit with a family, talk to them for a bit, and be honest. I think we need to let go of those legal shackles that are holding us all down. I know it’s not perfect. I know they’re in place for a reason. But honestly, partnering with the families will make a massive difference, especially in those emergency moments when they have to trust you.

Kevin Pho: And how can people find you?

Deb Discenza: PreemieWorld.com. And here’s my book. I’m so proud. Our second edition just came out, and we’re very excited. So, PreemieWorld.com, then go to CrystalBallHealth.com and BlackNICUFamilies.org.

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

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

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