We begin our four-part series “Hot Topics in Neonatology” with the story of author and preemie family advocate Deb Discenza. Deb was 30 weeks pregnant when she gave birth to her daughter, Becky. In this episode, she shares their NICU story of persistence and resilience, and how she is paying it forward by helping and supporting other pregnant people and their pre-term babies.
Find resources and more info at PreemieWorld.
Guest:
Deb Discenza, Founder & Executive Director, PreemieWorld Foundation Inc.
Producer, Host: Carol Vassar
Explore the Full Series:
Part 2, Episode 51
Fluid Dynamics: What’s New in Treating EPRA
Part 3, Episode 52
Fragile Beginnings: Exploring NEC in Newborns
Part 4, Episode 53
Babies in Crisis: Understanding Neonatal Abstinence
EPISODE 50 TRANSCRIPT
Carol Vassar, podcast host/producer:
Welcome to Well Beyond Medicine, the Nemours Children’s Health Podcast. Each week we’ll explore anything and everything related to the 80% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar and now that you’re here, let’s go.
MUSIC:
Let’s go! Well Beyond Medicine.
Carol Vassar, podcast host/producer:
The Nemours Well Beyond Medicine podcast team recently spent time talking with experts at a conference called Hot Topics in Neonatology, and we thought, “What a great title for a podcast series.” This episode marks the first in a four-part series featuring topics centered on the world of neonatology. That’s the branch of medicine concerned with the care and development of newborn babies, especially those babies who are sick or premature. We’ll talk with those in the know about the latest treatments in amniotic fluid replacement, quality improvement initiatives, protocols that have proven effective in saving the lives of preterm babies and the effects of neonatal abstinence syndrome.
You’ll hear the acronym NICU, Neonatal Intensive Care Unit, a lot. We begin in the NICU actually in 2003, a place Hot Topics and Neonatology presenter Deborah Dicenza never thought she’d visit, though she had an eerie feeling about it. Deborah was 30 weeks pregnant when she gave birth to her daughter, Becky. This is their story of persistence, resilience and paying it forward by helping and supporting other pregnant people and their preterm babies. Here’s Deborah Dicenza.
Deborah Discenza, author & preemie family advocate:
I was seven and a half months pregnant and the month before I had been to the OB and I said, “I’m worried this baby’s coming early.” She looked at me, she’s like, “Oh, you’re doing great. No, no, no, it’s your first baby, you’ll be late.” I said, “Well, I’ve been reading the labor and delivery books, the parent to be books, intensely. I’m worried this baby’s coming early.” She’s like, “No, no, no, the baby will be late.” A month later, I’m staring at Becky in the NICU in her incubator.
We were an hour outside of town and I felt my bladder let go or so I thought in the car. We were coming back from a family trip and I just asked my husband to please pull over to a bathroom as a pregnant woman would. Didn’t say anything to anybody. I was so embarrassed and I’m thinking, “Oh God, I’ve had an accident. This is horrible.” Then I got out of the car on my own, went into a grocery store all the way back to the bathroom. I’m all alone in there. I pull down and it was very obvious I was gushing fluid. I could see-
Carol Vassar, podcast host/producer:
Your water broke.
Deborah Discenza, author & preemie family advocate:
Oh, my water broke. Yeah. I sat there going, “No.” I’m crying. I’m very upset. I knew I was having a girl, and we knew the name was going to be Becky. I’m like, “Becky, I’m so sorry. I’m so sorry.” I’m like crying. I’m trying to call people in the car on cell phones that honestly in 2003 did not have the greatest range. I was getting voicemails. I’m like, “Forget it. I’m just going to clean up as best I can and get up front.” I went up front. I was going to head to the car, but I happened to pass by the grocery store front office, and I turn to them. I said, “May I borrow your phone?” They said, “Sure.” I said, “It’s long distance. I need to call my doctor. I believe I’m in preterm labor.”
I was literally that focused. I was hysterical in the bathroom, now zeroed in focused. It was like Becky was in there going, “Okay, come on, come on, chop chop.” I was calling the OB’s office, which is the one thing I could remember. I could remember their number. They asked me, “Is there anything else we can do for you?” I said, “Yes, could you please ask my husband in the green Durango in the parking lot to come in here?”
Carol Vassar, podcast host/producer:
This is the people at the grocery store?
Deborah Discenza, author & preemie family advocate:
Their jaws are hitting the floor. They’re just like, “oh my God”, they’re hysterical. They went out and as I was leaving a message with the answering service, this was on a Saturday as it would, they came in and suddenly my brother-in-law and my husband they heard the whole thing as I left the message. We got off the phone and we got in the car. They said, “We’re getting to the hospital now.” We were an hour outside of town, and my husband got us there in forty-five minutes weaving through a traffic jam, of course. We were like, “Why didn’t we take the keys away from him?”
Carol Vassar, podcast host/producer:
But he got you there.
Deborah Discenza, author & preemie family advocate:
He got me there. I got checked in, all that stuff. Really, I have to say, labor and delivery was a rocky road for me because I had a nurse bully me and say, “Did you do this? Did you feel this?” I said, “Maybe, I don’t know.” “Well, if you had come in here before now, we could have stopped this.” I’m like, “How’s that helping me right now?” I don’t know what’s… I’m thinking back, I was a month before talking to my OB, “I believe this baby’s coming early.”
They eventually got me into Labor and Delivery and they didn’t say much to me about what was going on. Eventually it was like it was like 30 hours in Labor and Delivery, and the contractions came and went. I wasn’t in excruciating pain the whole time, thank God. They told me that I would be there for six weeks or until I delivered. I was very focused on the six weeks, not thinking I was about to deliver, thinking I had gotten to the right place. They gave me the steroid shots to help with her lungs. I was very aware of what they were doing. It was like textbook. I could hear it. I was like, “Okay, they’re doing this, they’re doing this.” Then the contractions got a little heavier a little bit the next day.
Next thing I know that night we had a neonatologist come visit and I was like, “Why are you here?” He said, “If she were born right now, she would be fine. Any questions?” I just stared at him. I didn’t know you were coming. I don’t have a clue what to ask you. I literally just stared at him like, “no”, it was so awkward because 10 minutes later, Becky was born. I was in full labor. I knew I was in full labor, but nobody was saying anything to me. They were trying to “stop it”. They told me when they came in, the nurse said, “You will be delivering tonight.” I look up at the clock and it’s 20 minutes to midnight. Becky was there at 10 of. It was fast, and it was also very violent because I was pushing her out. My body was doing everything. I didn’t know what the heck to do. I hadn’t even had Lamaze yet. I hadn’t had the paternity tour, nothing. It was awkward.
Carol Vassar, podcast host/producer:
This is your first child?
Deborah Discenza, author & preemie family advocate:
My first child so I have no idea. On the way to the hospital, I asked my sister, I’m like, “Miriam, what is labor and when do I ask for the epidural?” Very calm. Cool, calm and collected.
Carol Vassar, podcast host/producer:
I’m assuming there was no epidural at that point.
Deborah Discenza, author & preemie family advocate:
No. I asked the nurse for it.
Carol Vassar, podcast host/producer:
It was too late.
Deborah Discenza, author & preemie family advocate:
She said, “You’ll be delivering tonight.” I’m like, “I haven’t had Lamaze yet.” Like that’s an excuse. No, I can’t deliver. Nope, can’t happen because I haven’t had Lamaze yet. “Epidural?” “No, we don’t have time for that.” “Wait, what?” And she taught me Lamaze in five seconds. I got to thank her later at a conference I spoke at.
Carol Vassar, podcast host/producer:
Oh, that’s wonderful.
Deborah Discenza, author & preemie family advocate:
I was so grateful.
Carol Vassar, podcast host/producer:
They whisk Becky off to the NICU.
Deborah Discenza, author & preemie family advocate:
My husband follows. Yeah, they showed her to me real quick for the imprinting, which was perfect. The entire team cheered when Becky came out and she had the tiny little kitten cry. It was so affirming. I felt really good. I’m like, “Okay, we’re going to take her down to the NICU. We’re going to take care of her, dah, dah, dah.” That was awesome. Then my husband decided it was important to get me down on the stretcher, instead of to my room, take me straight to the NICU to see Becky.
Carol Vassar, podcast host/producer:
What was that like?
Deborah Discenza, author & preemie family advocate:
Overwhelming. I’m all on all these drugs. I’m exhausted. It’s been 30 hours. I had only four hours of sleep maybe at one point. Really it was overwhelming. Bright, bright lights, alarms going off. Becky with her lusty, little cry was screaming, God bless her. It sent just shivers up my spine and my body started reacting. I’m dead tired. I can’t function, I can’t get out of bed. I can’t do anything. They have me in this stretcher and my husband’s taking pictures of me. I’m like, “Really?” Yeah, she was screaming. My body was responding and that was traumatic. That was really hard. I was like, “What do I do? What do I do? What do I do? I got to protect you. What do I got to do?” That mom instinct was already there and I was just, I mean, I look back at that and I go, “Wow. I was advocating, was trying to figure out.” I felt like a mess. I always thought I was a complete mess.
Visiting her was really hard because it was overwhelming. The noise in the NICU, the alarms going off, Becky screeching, turning blue, all these things and the whole NICU stay was extremely overwhelming for me. I was very afraid. I was afraid for her. I was afraid for our family. I didn’t know what the future held, but they were like, “She’s doing great. She’s doing great.” Then she wasn’t doing great. We’re a total of a 38-day stay in the NICU. She had her honeymoon that first week. I got to hold her. It was awesome but it was also frightening because she was so light. I was so used to my nieces and my nephew at the time who were monster babies.
Carol Vassar, podcast host/producer:
How much did she weigh at birth?
Deborah Discenza, author & preemie family advocate:
She was two pounds, 15 and a half ounces so just under three pounds. [inaudible 00:10:10] light as a feather. All I could think of is, “Becky be heavy, be heavy Becky.”
Carol Vassar, podcast host/producer:
That first NICU experience and those that were subsequent, talk about the negative and the positive of being a parent in the NICU with a child who is less than three pounds.
Deborah Discenza, author & preemie family advocate:
Well, the positive was definitely being able to hold her for the first time. The negative of that was having to be told when I could hold her and being told that they have to wait until, they put her in my arms but they have to work around all the wires and everything. Becky didn’t weigh heavily on me because she was so light. All the responsibility and the sense of what have I done, that weighed on me even before then when she was in her incubator for the full week, I could only put my hands in and do the womb hold and that was about it. I could take her temperature, but I felt ridiculous. It was like, “Am I the best thing for Becky?” My mother-in-Law, when she came up, she said, “I wonder when you’ll be able to do kangaroo care.” She was a former RN. She had taken care of preemies in the Maternal Unit and in the Nursery.
Then I kept saying to the team, “Kangaroo care, I want to do kangaroo care.” I didn’t even know what it was. I just wanted to do it. I’m like, “I must do this.” They did. They said, finally, it was probably a couple weeks later, then they told me, “Come in. Make sure you shower. Come in with a long, button down shirt and we’ll do that.”
Carol Vassar, podcast host/producer:
Describe kangaroo care for those who aren’t aware of what it is.
Deborah Discenza, author & preemie family advocate:
Kangaroo care is skin to skin care. They place the baby on the chest of the mother, and the infant hears the heartbeat, which is a very soothing, calming feeling for the baby. That’s what they’re used to. It also helps them regulate their breathing, their heart rate. It’s just very calming for them. They can go into a very deep sleep. I’m not going to get real technical here because I don’t know enough about that.
Carol Vassar, podcast host/producer:
That’s fine.
Deborah Discenza, author & preemie family advocate:
There’s a lot of great benefits. It helps with their growth. M Most of all, it helps with the bond. I have to say, the first time they placed her on my chest, and I told her this later, I was like, “Becky, they placed you on my chest and you were like a big clammy insect.” She learned to thermoregulate so her temperature then attuned itself to mine. Very quickly she got comfortable and I couldn’t see her, but my husband’s right next to me. He’s like, “Deb, you need to see this.” “Well, I can’t, Greg. She’s right down there. Do you have a mirror?” He took pictures and the pictures he took are some of the best pictures because you could see her face. I’m just very calmly sitting there with her and her face is turned toward the camera and she’s just got her eyes closed, bliss. She was out. She was happily asleep. I’m like, “I want to do this. I want to do this every day.” Greg did kangaroo care. I did kangaroo care.
It wasn’t always as blissful because there were some alarms that went off so that scared me to death. That meant an awful lot to me that I could actually have that effect on her and that I wasn’t what I felt like as a failure. I felt like I’d failed her in the pregnancy and I had failed her in the delivery. I was sitting here, what else was I failing at? I really wanted to be there for her and do what I could do. I was also just trying to reconcile everything that had happened. I hadn’t processed everything yet, so I was just a wreck.
Carol Vassar, podcast host/producer:
Talk about the importance of advocating as a parent, as a mom, for your premature child.
Deborah Discenza, author & preemie family advocate:
I had to really understand the lingo and that was hard because I wasn’t a medical doctor. I’m thinking, “What do I ask for? How do I do something? How do I help her?” I think the hardest part for me was when it came to breastfeeding. I attempted breastfeeding. I didn’t understand how that all worked, first child. I assumed that she just wasn’t going to. It stopped with lesson one. Nobody said to me, “You just need to try again tomorrow and da, da, da.” No one said a word. I said, “I’ll just keep pumping.” That’s all I needed. I just kept pumping, pumping, pumping. Yeah. She ended up with sepsis later and she got really sick. We almost lost her. After that, the nurse that was caring for her came at me and said, “Why aren’t you breastfeeding?” I’m like, “What”? She just said, “It’s better for the baby.” I’m like, “But I’m pumping.” She said, “No, breastfeeding’s better. We all did it with our kids.” I had no snappy comeback but my thought was later, “Did you have a preterm infant? Did you go through this?”
Carol Vassar, podcast host/producer:
And not every mother can breastfeed.
Deborah Discenza, author & preemie family advocate:
No, I know.
Carol Vassar, podcast host/producer:
Let’s remember that.
Deborah Discenza, author & preemie family advocate:
I was filling our freezer in the kitchen. We had to buy a full freezer for the basement. That’s how much pumping was happening. I felt so proud of myself and then I felt deflated hearing that. I think advocating was also learning my limits. I had to talk to my in-laws that night and I said, “I don’t know what to do.” My mother-in-law was like, “You get that nurse away from your child.” I happened to know the medical director already. I called him and I said, “Get her off the care of our child.” That was the best thing in the world. But advocating is so many things other than just getting up and speaking up for yourself. It’s also communicating your frustrations and your needs to like your in-laws and saying, “I’m not sure what to do.” It was a healthy discussion. It was the best thing I could have done at the time. Yeah. Then I think as far as the rest of the NICU state, it was really just trying to learn the lingo and trying to figure out how to talk to the team.
Carol Vassar, podcast host/producer:
It sounds like you had a good support system. Your in-laws, your immediate family. It sounds like your husband, your brother-in-law, your sister-in-law, and then you developed a support system and provided support for other mothers in similar situations. How important is that?
Deborah Discenza, author & preemie family advocate:
It is very cathartic to be able to give back because all the things that I feel like I didn’t do, I can help them feel empowered in a way that I didn’t. While I did, as we headed out the door and as we went home, that definitely kicked in, the NICU stay was really very intimidating for me. I remind parents that they’re the expert of their child and that they knew that baby first. While the medical team, they’re the medical experts of that child so you have to work with the team together to do that, to get that baby home. The big thing, and I say also to do kangaroo care and why that’s important, and to sing to your baby and talk and love your baby. If your baby’s on the ventilator, then just sing to them quietly, read to them quietly. You’re still there.
Carol Vassar, podcast host/producer:
They know your voice already.
Deborah Discenza, author & preemie family advocate:
Mm-hmm. They know your smell too. I remember hearing that going, “Really?”
Carol Vassar, podcast host/producer:
Now you are the co-author, it’s in its second edition which is amazing, of a book called Preemie Parents Survival Guide to the NICU. Give us some high-level advice for parents who might be listening right now, or people who know parents of preemies that they can use if they find themselves unexpectedly visiting a NICU, walking into a NICU with a new baby.
Deborah Discenza, author & preemie family advocate:
It’s okay to cry, and it’s okay to feel. Give yourself that moment. When you meet your child just know that this is not what you wanted. This is not the normal, but this is your new normal. How do you work around that? You find ways to bond with your baby. That’s the biggest thing. Bond with the baby because it feels so alien to put your hands into the portholes of the incubator and think that’s loving your child while your friends have that picture-perfect moment on Facebook with the hair done and makeup and all that and the tiny baby. Yeah, okay.
Carol Vassar, podcast host/producer:
Facebook is not real.
Deborah Discenza, author & preemie family advocate:
No, no, it’s not. To realize that and to realize that everybody has things that they hide and they don’t tell you about. It’s self-care. It’s about making sure that while you visit the baby, that you also take time away from the baby because that baby needs you at your best when you show up, not at your worst. You can’t live at the hospital, you try not to. But if you’re having trouble with things, find out where there’s a support group. Sometimes they’re in the hospital, sometimes they’re outside the hospital. That can be a big help to meet other parents. That was how I found Preemies Today, which was a support group in my area. It was my lifeline when Becky was still in the NICU and had gotten so sick, and I found their newsletter in the waiting room, and I was like, “Oh, thank God.” I felt like somebody understood. They understood everything. Whether or not we had the same gestational ages or weights or conditions or anything else we understood the trauma and we understood the fear. Yet we could also celebrate the little joys like she gained an ounce or she’s in a bassinet.
I think the biggest thing is to make it clear to the team, how can you work together to help the baby? That brushes aside a lot of differences and any potential blockades of relationship with the team. The nurses are there. They care greatly for these babies. Not everyone’s perfect. The doctors, same thing. They want this baby to go home. They’re all about success. That also depends on what your version of success is. Not every baby goes home looking 100% perfect. This is not reality. We love our babies no matter what.
Carol Vassar, podcast host/producer:
Becky is 20.
Deborah Discenza, author & preemie family advocate:
20 years old. I still go, “Oh my God.”
Carol Vassar, podcast host/producer:
You’re presenting here on how being a preemie affects young adults and Becky’s in that period. I want to ask first and foremost, how is she?
Deborah Discenza, author & preemie family advocate:
She’s good. She’s an amazing young lady. Yeah, it’s been a journey. I will definitely say that no one really told us the roadmap of what it was to go home and what it was going to be like in the first five years, the first 10 years. All the neonatal therapists told us was, “There’ll be delays.” Well, Becky went home on oxygen in a monitor, so we had to learn CPR, infant CPR. She got off the equipment at one point. It just took a lot longer. She had a lot of feeding issues. That should have been a sign to us that there was trouble ahead. As she got better and better, she had horrible reflux. We were working with the anemia and everything. We were following up with the pulmonologist, the ophthalmologist, the cardiologist, every -ologist you could possibly think of but we were getting good reports.
Then we went months and months. Finally the pediatrician said, the day that Becky qualified for early intervention at 18 months of age is the day he told us she had asthma, reactive airway disease. I’m like, “You’re kidding me?” It was just like punch, punch. It was quite a day. I remember just being like, “I don’t know if I can handle this.” But we got through everything. She went through early intervention. She went through Child Find Preschool, and she entered kindergarten where she got diagnosed with autism at six years old. Still had feeding issues so we assumed the autism was the reason she had feeding issues. ADHD in second grade, and then in third and fourth and all that, I was trying to figure out what was going on with her walking gait. I’d been talking about it for years with different specialists and asking very quietly. At 11, we went to an orthopedic surgeon and I said to her very quietly, while Becky was looking away, I said, “Is it possible she has CP, cerebral palsy?” “Oh, well, she does. It’s really, really, really mild.” Okay. No diagnosis, nothing.
We went back for our re-script of her orthotics, the little inserts in the shoes that help with gait. Yes, this is working. Can we get a re-script? Okay. Didn’t think about it. This newer doctor in the practice had Becky run up and down the hallway. As she’s doing that, I could see things had gotten worse. I’m like, “uh” and from beside me, the doctor goes, “How early was she?” I went, “Oh, no. 30 weeks.” She brought Becky back in. She said, “Becky, get up on the exam table.” She grabbed her leg and she did click her ankle. She said, “See that?” “Yeah, you mean the stiffness?” She said, “That’s spasticity.” I’m like, “Really?” I had no idea what spasticity would look like. I assumed it was the jerky movements. I didn’t know. I said, “Okay. She has what?” She was 13 and a half. She had just had her bat mitzvah six months before. I’m sitting here taking this all in, the doctor’s starting to talk about ideas of treatments and stuff, and I’m like-
Carol Vassar, podcast host/producer:
For CP?
Deborah Discenza, author & preemie family advocate:
Like Botox injections and clipping heel cords. I’m still reeling from the information. I’m like, “Well, I’m glad we have this information.” Then Becky’s next to me, she goes, “Mom, what’s going on?” I turned to her. I’m like, “Oh my God, I can’t hide this from you.”
Carol Vassar, podcast host/producer:
No.
Deborah Discenza, author & preemie family advocate:
“You’re 13 and a half.” The doctor jumped in, thank God. It’s just one thing after another. She had feeding issues. We had to go see a feeding clinic for that. You name it, we’ve been through it. Nobody prepared us for this when we left the NICU or even talked about it in the NICU. I think it’s just really important for parents to know they have a voice if they have a concern. Their gut will tell them an awful lot. If their gut, they don’t know exactly what it is, go find out. Go ask people. That’s what their expertise is, but just say, “This is my feeling. I’m not sure something’s right with X, Y, Z.”
Carol Vassar, podcast host/producer:
Would you like to see better and more communication between parents and clinicians, particularly in the NICU, but all along the spectrum of that, going through infancy, toddlerhood all the way through adolescence?
Deborah Discenza, author & preemie family advocate:
Yes. I’m working on Preemie Crystal Ball, which is a data portal that will actually help communicate long-term outcomes. You could have parents come in and put information. You could have the adults come in and put in their information. You can have any number of those scenarios and you can pull the data together. When you have enough of a sample size, you can start providing outcomes not only to the parents, but also to each of the adults so that they know there are a lot of adults walking around. I was preterm. Well, I was told I was three weeks early, and then I found out after my mother passed away I was a month early, and that was in 1967. I’m not aware of any NICU stay. I’m not aware of anything. There was no NICU. I do not have newborn photos. That might be a clue. I have no idea.
I will say that the data needs to be a beginning to a conversation, not the conversation. It’s about building trust. It’s like you have to build trust between the parent and the professional. It doesn’t happen when you’re talking about taking away support from a baby. It’s conversation one that you have together. You build that trust that’s so important. It’s just everybody’s busy. I get it. We’re talking life and death, and we’re talking about parents who were dreaming of baby birthday parties and going home outfits and all that stuff. Now they’re here and everything is so foreign that they don’t know, like me they don’t know what to ask.
Carol Vassar, podcast host/producer:
You’re a very passionate advocate. What’s next for you?
Deborah Discenza, author & preemie family advocate:
For me, Preemie Crystal Ball, definitely. I’m working on a after the NICU version of the book, because I see that as its own book. I am the co-founder of the Alliance for Black NICU Families, which actually has racial and health equity in the form of a wearable breast pump for free in the United States. Then I’m also working on the Books for Healing Partnership. It’s basically patient education in the form of a children’s story. It could be any healthcare scenario. It doesn’t have to be pediatrics, it doesn’t have to be neonates. It could be adults, it could be anything. Just basically telling the journey or the condition or whatever it is, in a children’s story. Everybody loves a children’s story and in the back of the book are some resources and other things so they’re educating themselves.
Carol Vassar, podcast host/producer:
You found a life’s mission.
Deborah Discenza, author & preemie family advocate:
I have. My parents would be so proud.
Carol Vassar, podcast host/producer:
Briefly talk about the equity issue in preemies. Are we looking at a higher incidence of prematurity in certain populations? Talk about that.
Deborah Discenza, author & preemie family advocate:
Yes. In the African-American population, 20% of all preterm births are African-American babies. These are folks that do not necessarily have high resource hospitals. They may even have healthcare deserts. They may not have access to all the high-end types of treatments, things that do not necessarily get covered by insurance or Medicaid, things that are actually very costly, the hospitals won’t even provide. You have parents who then have another issue. They may have transportation issues, trying to get to and from the hospital, which then leads to the systemic racism, which is they get accused of, “Why aren’t you coming to see your child?” It’s a double-edged sword. It’s like me being told, “Why aren’t you breastfeeding?”, without realizing there’s so many different things involved with breastfeeding. For that mom, it could be she’s working a full-time job. She has to go back to work to feed her family. She’s got other kids she has to care for. Any number of things. It could be she doesn’t have a car, she doesn’t have bus money. You name it. It could be any number of things.
We make a lot of judgments and assumptions. We have to meet them where they’re at and give them the access in the best way possible. You know what, the best thing they can do is judgment can just go out the window. I always tell people the NICU should never have guilt in it. There should be no guilt in the NICU. I’m very clear about that because you don’t want to beat parents when they’re already down. You don’t kick them. We don’t want to kick back to the professionals, but we will because we’ll feel defensive. We got to meet together somehow and find a way and do it gently. What do you need? What can I help with? There’s tons of resources out. There’s tons of programs and other things. What I have found is the NICU social workers, they spend all their time doing paperwork. In thinking about that, if we could just find a better way and employ maybe an extra person to do that, they would do phenomenally.
Carol Vassar, podcast host/producer:
Anything I haven’t asked that you’d want to share?
Deborah Discenza, author & preemie family advocate:
Yes, I do. To the families that have lost babies, of which a number of them I’ve worked through things with them. That’s really hard. I had a father in Italy reach out about a year and a half or so ago, and I think his child was 22, 23 weeks, and his daughter died at 17 months of age in Italy in the NICU, still in the NICU. I don’t know how that happened. Yeah. He was just traumatized. Every speech I go to, I always say the name, Georgia and Georgia is always on my mind. I tell the father, I always write him and say, “I said her name today.”
Carol Vassar, podcast host/producer:
Deborah Discenza is an author and advocate who has dedicated her life to creating community for families with premature infants. She is co-founder of the Alliance for Black NICU Families and CEO of the PreemieWorld Foundation, whose mission is to create and curate equitable access for underserved populations to patient education, advocacy tools and outcomes data specific to the preemie population. Her daughter Becky is now 20 and is completing community college courses that she started at age 14. She plans to continue her education at George Mason University, majoring in Art and Game Design. Deborah had this to say about her daughter.
Deborah Discenza, author & preemie family advocate:
She’s an amazing young lady. She’s very kind. She’s really a sweetheart.
MUSIC:
Well Beyond Medicine.
Carol Vassar, podcast host/producer:
We thank Deborah Discenza for sharing her story with us. Maybe you’re a parent or caregiver with a NICU experience to share. We’d love to hear it. Leave us a voicemail at NemoursWellBeyond.org. There you’ll also find all of our previous episodes. You can subscribe to the podcast and leave a review. Our production team for this episode includes Che Parker, Susan Masucci, Cheryl Munn, and Yari Payne. Our Hot Topics in Neonatology series continues next time as we talk about a new treatment for a nearly universally fatal condition marked by a dangerously low level of amniotic fluid during pregnancy. I’m Carol Vassar. Until next time, remember, we can change children’s health for good well beyond medicine.
MUSIC:
Let’s go Well Beyond Medicine.
