As a neonatal intensive care unit (NICU) nurse at a Boston hospital, Stephanie Shine knew how precarious preemies’ lives could be with all the complications they faced. What she didn’t know was that she would soon experience it from a parent’s perspective. Her son, Sam, made his entrance into the world at just 26 weeks and then spent the next 101 days in the NICU. Here is her emotional story of Sam’s survival and why she credits the March of Dimes for saving his life.
Describe your pregnancy and Sam’s birth.
My first pregnancy was completely normal. I had a full-term baby who was 6 pounds, 8 ounces. So, for my second, I didn’t have concerns. I was always very small with my first son, Charlie, and they would do ultrasounds to make sure everything was OK, and it was. So with Sam, I also was really small. And I told myself, “I’m not going to worry because the same thing happened with Charlie.” After working all weekend, I came home, slept and then went in for my 26-week appointment. I had Charlie, my 2-year-old at the time (as fun as that is to have your child in the office with you!). I had to take the urine test to check for protein, and it was positive, but Charlie was all over the place so I kind of forgot about it. I sat in the waiting room for a while, and then they took my blood pressure, which was high, a sign that I might have preeclampsia. I was sent over to triage to have an ultrasound and he was measuring 22 weeks. And then they saw that the blood flow to the baby was reversed. The preeclampsia had advanced. The only thing you can do is deliver the baby.
I called my charge nurse and said, “I’m not coming in tonight. I have preeclampsia and I have to deliver.” And she said, “You’re pregnant?” I was still so early that a lot of people didn’t realize I was pregnant. I told her, “You’re getting a 26-weeker and it’s mine.”
He was born and he weighed 1 pound, 2 ounces. Blond hair and the cutest little preemie I’d ever seen. My friends were the ones who resuscitated him and saved his life. It was very emotional for everyone.
How does having your experience as a parent and NICU nurse differ from that of a parent who doesn’t have your expertise?
I think it really empowers you. I didn’t have to learn this new language or learn everything about what it means to be born premature. I was able to advocate for my baby because I knew I had the information to back up decisions we would make. I honestly don’t know how parents do it because there’s a learning curve that you are thrust into. Your baby is premature. So here are 50 words you need to know – here’s the slang that we’re going to use and the things you need to worry about. And meanwhile you need to learn these things as you’re going through the most emotional roller coaster of your life.
What have been your biggest challenges?
When Sam came home, he came home with an ostomy, a feeding tube and oxygen. He was small and very fragile. When you leave the hospital you lose your backup nursing staff who reassures you everything is OK. You feel all alone and it’s overwhelming. We came home in the fall and had a long, isolating winter ahead of us, keeping the baby home so he wouldn’t get sick. And there are issues that come along with prematurity that you continue to work through after the NICU. It’s certainly different than having a child born full-term.
Has your advice to parents of preemies changed?
I always tell them that this will be one of the most stressful things that your marriage will ever encounter. And you have to remember that it’s OK that you’re going to internalize something different than your spouse. I have to remind people just to take care of themselves emotionally.
How has the March of Dimes helped babies like Sam not only survive but thrive?
There are so many reasons that Sam is even here today because of the March of Dimes. Maybe they could have put him on a ventilator 30 years ago, but without the surfactant [a protein that keeps small air sacs in the lungs from collapsing], Sam probably would not have survived. If he did, he would have been on a ventilator for the rest of his life. They are constantly investing in how we can treat these babies better. There’s an organization funded by the March of Dimes that has neonatologists and the nurses get together to discuss best practices – to make sure we’re all doing the same thing.
Right before Sam was born, they found evidence if you hold a baby’s head midline – not letting it turn to the left or right for the first 72 hours – it minimizes the risk of having head bleeds. So right from the delivery room they do this and that protects the brain. It’s these small practice changes that can make a huge difference for these babies.
Who is Sam today?
Sam’s very loud; he’s very boisterous. My husband, Pat, thinks he’s the loudest 18-month-old we’ve ever heard. And he’s very determined. Sam’s tiny but has a huge spirit – he’s the light of our family’s life.
Why did your family become ambassadors this year for the March of Dimes?
We were very proud of Sam and proud of his story. The most important thing we wanted to do is to bring hope to other families. We are so grateful for the amazing care that he had and for the support that we had.