BUILDING A PARENTAL NETWORK
Deb Discenza sits down with Paragon’s Director of Marketing, Bri Ziganti, to talk about her experience with being a preemie parent, and why widespread support is so necessary.
Deb Discenza is a busy woman. As CEO of PreemieWorld, co-author of the popular book “The Preemie Parent’s Survival Guide to the NICU,” and mother of her own preemie, Deb has made it her mission to bridge the gap between the families of patients and the medical professionals who care for them. She believes that when parents are dealing with such a huge shock to the system, having a source of empathy, and most importantly, hope to turn to, can be the difference between heartache or a happy ending. Building a parental network that connects lives has become her life’s work. Deb graciously gave of her time so I could find out what drives her to inspire such a collaborative effort within the industry.
“You became active in the neonatal community when your own child was born premature. Could you tell me about your experience having a child in the NICU, and how that inspired you to form the PreemieWorld organization?”
“My daughter, Becky, had been a fairly normal pregnancy. I had no idea she was going to be premature,” Deb stated.
“I was at about 30 weeks gestation, shopping an hour out of town with my husband. My water suddenly broke. As if being in the middle of an unfamiliar grocery store wasn’t stressful enough.”
“Were you in a panic?” I wondered, imagining what I would have done. Probably would have started frantically flinging the vegetables everywhere…..
“It was a little surreal,” Deb laughed, “but no. I had this weird calm sensation, like my body took over for me. I was just focused on getting to the nearest hospital.”
“I had to be calm, I figured being hysterical wouldn’t help anything. And– I was in shock. After all, this baby wasn’t supposed to be here for another two months!” she continued. “So, we just sort of said, ‘okay, we can do this.’ We got to the hospital and checked into the delivery room. At this point, I was sure the birth was going to happen, but they decided to stop the labor to give her a little more time. I ended up staying overnight while they gave me shots to help mature her lungs.”
Needles. I cringed.
“At ten minutes to midnight, she was born,” Deb said. “Hearing her cry was one of the most joyful things in the world. It was a very weak, very tiny kitten cry, but everyone in the room, even the staff, they just gasped. There were so many moments of a normal delivery, the things you expect to hear and see and feel, but so many that were not.”
“Like what?” I asked.
“Well, for one, I didn’t get to hold her,” Deb said. “I couldn’t. They took her right to the NICU.”
“That had to be so difficult,” I said.
“Reality hit hard the next day,” she agreed. “Visiting Becky on a stretcher in the NICU, seeing a tiny little baby all hooked up screaming her head off…..staring at this child, thinking, ‘will she ever walk or talk?’ ‘Will we get to bring her home?’ There was no real feeling of rest, or peace. We were just praying all the time, because otherwise, we were sitting there, watching, feeling weak and frightened and isolated. It was the most difficult thing.”
“And this was the beginning of it all?” I asked.
“Yes. I was trying to figure out how to be a mother when she was surrounded by medical equipment and staff. I didn’t understand, society didn’t understand. I felt completely useless and I didn’t want another parent to feel the same way.”
“How long was she treated in the NICU?” I asked.
“38 days. Doesn’t seem that long now, but at the time the experience was a marathon from the moment of birth. She was on oxygen and all these monitors; I had to become a medical professional immediately! And yet, to be able to do nothing for her, to just wait and watch, was maddening.”
“Parents in the NICU feel like they’ve been cheated out of comradery and motherhood,” she continued. “I wanted to help families understand how to communicate with medical professionals, not like an ‘us against them’ mentality, but a way to bridge the gap between parents and staff. There are all these residual issues stemming from the time your child is in the NICU, and I wanted to focus on them.”
“When I wrote the book, I ended up connected with so many families. They really resonated with that sense of understanding, feeling like they are being guided through the experience. And NICU staff liked the book too, because it helps them understand from the parents’ perspective.”
“What was the most important idea you wanted parents to take from your book?” I asked.
“That it’s okay to have a sense of humor,” she answered. “It’s incredibly important to have any coping methods possible.”
“Now, you act as assistant chairperson to PreemieCare. Tell me about your role in mentoring the parents of preemie children within the organization. What types of educational resources do you provide? Do you provide hospitals with advice on interacting with the families of preemies?”
“PreemieCare functions like a sister organization to most. We list different support groups, write columns educating professionals on preemie parent perspective. We’re very active in several, especially Neonatology today, neonatal intensive care journal, and neonatal network,” she said.
“What about your more recent work? I believe you filmed a few videos that captured the preemie parent perspective you were talking about earlier,” I asked.
“I connected with a colleague of mine to film two videos: one for parents, one for professionals. The first is all about the importance of early intervention- why it’s important to work with therapy professionals- and the second talks about how to juggle traveling to get your continuing education, along with the rest of your career and your family life. I really think it’s important for the therapy community to really try and put themselves in the shoes of the parents, and for the parents to embrace therapy as a way to heal their child and improve their quality of life.”
“Would you say this has been the most rewarding instance in your career?” I wondered.
“No,” said Deb, “If I had to pick one moment, I’d say it was the time a NICU nurse wrote into me for advice. She had a mom on her floor with three triplets, and she wanted to know what she could do to make mom feel better. I told her to write mom a letter from the babies’ perspective, and put it on the patients’ incubators. My nurse wrote back to tell me that the mom was so touched, she was crying, and the note had made her day.”
“Why do you think that was so powerful for you?” I asked.
“It’s come full circle now for me. Helping a parent without knowing them- and yet, understanding her so well- was so incredible. Preemie parents have such an intimate connection with each other; there is no pretense between us. To turn around and help someone in the same situation I was in and try to make sure she has a better experience than I did, was a big moment for me. I think when parents help each other, it allows them to be advocates for their babies.”
“Your blog is read by thousands of preemie parents around the country. What message do you hope they receive from your work?” I asked.
“Most importantly, I want each of my readers to know, to really believe, that access to a support group is very important. Whether that’s in person, or by phone, or even over the internet. There are so many communities now that can help you make sense what’s happening, and do it in a way that’s on your level. It’s scary to have to exist in a space where you don’t understand what’s happening. Connecting with parents who’ve been there or are going through it now- that’s so valuable,” she said.
“It’s overwhelming, just trying to get everything for your child. Full-term parents have such a different experience. Everyone else is upset their baby isn’t sleeping. Preemie parents are just happy their baby is breathing. I really believe that the perspective of a preemie parent has to be humor.”
“Do you think NICUs have a good handle on including this parent perspective in their treatment plans? “It has to be difficult for hospitals to find the time for family centric care when they have so many delicate patients to take care of.”
“NICU staff does a pretty fantastic job juggling all their responsibilities. But I do think allocating more resources to supporting family-centered care would be beneficial. Research shows that calmer parents means a calmer baby, and we all know that the baby needs to be in an environment where they can sleep. A team approach in the beginning would be wonderful.”
“Team approach? Can you elaborate?” I asked.
“Giving the family a tour so they know where everything is and won’t get lost. Welcome packets are good, but physically walking them through the space presents a better experience. That way, the staff doesn’t have to constantly waste time reiterating directions to the parents, and the parents feel more at home in a place they’ll probably spend a lot of time in. It’s a very chaotic place, the NICU, so anything that can calm that for the parents will help. Making the family feel welcomed, despite the stress, and providing a connection in whatever way possible, is just so important.”
“To be denied the basic ‘parenting experience’ is difficult. It’s almost like your maternal rights are gone,” Deb continued. “Having someone there to complement the mother on her baby, makes her feel like a ‘normal’ parent. Many NICUs now do group activities, and I think that’s a great start. But often, the NICU is just so busy, it’s hard to focus on the family when the patients need so much attention.”
“Clearly, nurses have to be very strict with time management,” I said. “Many hospitals have tried to lighten the load by installing patient management systems. Speaking as not only a parent of a preemie, but as someone intimately familiar with the hectic environment of the NICU, how do you see these management systems affecting preemie care in the future? Do you think nurses can provide better care to their patients by using such a system?”
“To expect medical professionals who are directly responsible for care to take on other things is a lot to ask,” Deb answered thoughtfully.
“Nurses are constantly running around like crazy, the parents are desperately watching their baby turn blue, alarms going off while the nurse is in the other direction desperately trying to catch up. Administrator jobs aren’t the jobs they want or need to do. Anything that automates those tasks is so much more efficient and accurate, and helps the patient and the team that much more. It’s a win win for everyone, and the baby benefits the most. There could be a perfect storm where the nurse looks away and a baby turns worse in a blink of an eye. Automation helps prevents against medical mistakes.”
“I don’t know how they do it,” she said.
“There are plenty of parents’ groups on the internet and in nearly every community. Why do you think preemie parents need specific programs and support? Why was building a parental network so important for you?”
“I think there’s just a completely different attitude,” Deb said. “Preemie parents are hyper vigilant—now, don’t get me wrong, obviously full-term parents are always worried about their kids. But I feel like I look at my daughter in a very different view than a full-term baby’s mother would. If we had had a normal birth experience, I wouldn’t have had to face the possibility of losing Becky. Most parents of full-term babies think ‘Oh, she’s out of the hospital, she’s fine now, you’re overly worried,’ but what they don’t seem to really grasp is, this isn’t a short term thing. Preemie birth can have lasting consequences, and sometimes we won’t know what those are until the child is older.”
“Becky is an exceptional child,” Deb continued. “She started reading very early, by kindergarten she was reading large non-fiction books. But this wasn’t our ‘normal’ for a long time. Becky had speech and motor issues, and she has autism.”
“That must have been difficult, getting that diagnosis,” I said.
“It was,” Deb admitted. “But it’s funny…..here the whole world had been telling me that I need to relax, and I couldn’t. But the moment I found out she had autism, I realized I had to stop thinking about what the rest of the world was saying, and trust my gut instincts. It’s what I’d tell any preemie parent—any parent, really—that YOU are the expert on this child. It can never hurt to act on guts. You have so much to offer this baby.”
“What final thoughts would you like to leave with any parents of preemies reading this now?” I wondered.
“Love and celebrate this baby because it could have a profound effect on their development. And never be afraid to ask for help. Even just sitting with someone and talking things through with them, or getting out the NICU for a half hour, can help. Take care of yourself, because you are this baby’s most important support structure.”
Deb Discenza is the author of “The Preemie Parent’s Survival Guide to the NICU,” and of the popular PreemieWorld blog. Thank you, Deb, for your continued support and partnership with SafeBaby! We are honored to know someone so focused on building a parental network for preemie families.
This interview was originally published by SafeBaby in April of 2014 and has been archived here for the enjoyment of preemie parents.