Deb Discenza – Author/Founder/CEO & VP of PreemieWorld; Crystal Ball Health; and Alliance for Black NICU Families

“The preemie community is filled with the most selfless parents and pros. It gives me hope for the future of our children.” – Deb Discenza

PW:  How long have you been in your field?

DD: 17 years

PW:  Why did you choose your current profession?

DD: My profession kind of chose me! When my daughter Becky was born at 30 weeks gestation at 2 lbs. 15.5 oz in September 2003, I entered the world of the NICU.

I came from a background in writing and editing, publishing and in technology. Watching my tiny baby hooked up to all sorts of medical equipment left me wanting to hide in my postpartum room and later on, at home and back at work. I felt I had failed her and during her stay, I felt impotent to do anything for her – that my being there did not matter because it was the medical team who were crucial in her survival. I learned a lot during that time about my daughter, her resilience and her strength. And I also learned what it meant to be a mother of a medically fragile infant and work through adversity and come out the other side as we did with my daughter’s early birth, a hurricane and more. I would have been completely lost if it were not for my husband Gregg and for Nurse Donna in the NICU. They were amazing.

As I sat in the pumping room in the NICU one day during the stay, I saw a parenting magazine and figured I should start reading these types of materials. By the end of the pumping session, I put the magazine down and felt utterly confused. The magazine talked about developmental milestones and things that we couldn’t even begin to predict for Becky. I never read another parenting magazine after that and 6 months down the road I left my high-end executive job and started a free parenting publication called “Preemie Magazine.” We were very popular across the United States, doing drop shipments to NICUs and other outlets. Sadly the Great Recession was on the horizon and though we were close to profitable, we had to fold. As sad as that was, it gave me the chance to do so much more. PreemieWorld (https://preemieworld.com) has allowed me to create a special community for families and for professionals. I also co-wrote “The Preemie Parent’s Survival Guide to the NICU” which is a well-loved book for families while also being a great guide for professionals, too, on patient family relations and perspectives. Add to that I created Crystal Ball Health (https://crystalballhealth.com) to create a data portal for patient-reported outcomes across the lifespan to give our children and their families better long-term outcomes information. And in 2020 with the death of George Floyd, I found myself realizing that with the Black Lives Matter movement making serious headway, the best way for me to support that movement was to effect change in my own community. For years I had heard from families about the challenges of being African American in the NICU and beyond. Systemic racism is not just hate language or action. It is as silent as not providing a family information. It is as insidious as ignoring that Mom at bedside only until you need something from her (clinical trial enrollment especially). And so with co-founder and President Ashley Randolph of GLO Preemies (https://glopreemies.org), we started the non profit Alliance for Black NICU Families (https://BlackNICUFamilies.org). We are pushing to end systemic racism in our community by pushing policy change in licensing educational requirements for professionals and providing concrete financial assistance to families.

So in the end, from a scared mom in the NICU, I am now a leader. My bravery came from my little warrior Becky. She inspires everything I do every single day.

PW:  What do you want other professionals to know about what you do?

DD:  Families are terrified in the NICU. They have zero control. Be patient and be honest. But also provide some form of comfort in terms of access to a support group (you can find one at NICU Parent Network – https://NICUParentNetwork.org or Alliance for Black NICU Families – https://BlackNICUFamilies.org) and the ability to be a parent. Being a parent does not mean just changing a diaper or taking the baby’s temperature. It means talking to the parent with respect and making it clear that they are part of the team. Doing so actually has the profound opportunity of creating trust. That can mean a lot in the moment where decisions have to be made in an emergency and not spent going over papers or links from WebMD or Google.  As you tell the family about your expertise, make sure you remind them of their expertise as well. They knew that baby first, they know a lot watching that baby more than anyone else day in and day out in the NICU. They can be your greatest ally if you let them.

PW:  What advice do you give to preemie parents?

DD: Ah, yes, very specific items:

– You knew your baby first and you are part of the team. Ask to be part of rounds.
– Kangaroo Care – your baby knows your heartbeat and your smell. It is comforting and your body help regulate the baby’s vitals. Do Kangaroo Care whenever possible.     And Dads are encourage to do the same.
– Read, sing, hum to your baby. Your baby knows your voice and again is comforted. This is a great thing to do when you are not able to hold your baby.
– Mental Health – Yes, Mom and Dad – keep an eye on your mental health. You probably think this is the last thing to worry about right now but you would be wrong. Your mental health can actually have an affect on your baby’s outcomes. Struggling? Get help. It is one of the best ways you can help your baby right now.

PW:  Fun Facts: Tell us a fun or quirky fact about you.

DD:  Chocolate. Yeah, you read that right. I absolutely love chocolate in small bits and pieces. Smarties from the UK are my favorite, but M&Ms tend to be my go-to. Ever want to make me smile? Send me Smarties or M&Ms. 🙂

PW:  Is there anything else you’d like to share with us?

DD:  With our community coming out of a pandemic, I hope that we will take stock from the challenges that were present in NICUs worldwide. Stories of separation of babies from families were constant during 2020 and were demoralizing. Lest we think we were protecting these babies by separation, we need only look back several decades or more to when babies were always separated from their parents. The outcomes of those babies show just how damaging separation is not only to the infant but to the family dynamic. Always include the families in whatever way possible. Take tests to visit, wear full surgical garb, whatever. But do not separate the babies from their families. Only time will tell if this generation of NICU babies will end up in the same outcomes scenario as those babies in the early days of neonatology.