Sixteen years ago, I chose to dedicate my life to caring for premature infants and sick newborns. I remember being in residency in the NICU and in awe of these tiny premature infants who were stronger and fought harder than any adult patient I had ever seen. This awe continued over the course of my training as I prepared for my career as a neonatologist. I was able to watch these babies go through ups and downs and still fight. I saw them repeatedly defy odds for survival, work hard for their long term outcome, and peacefully earn their angel wings while in the loving arms of their families when they couldn’t fight any more. I also watched their families as they lived through the same ups and downs while cheering, praying, and crying for their little warriors. I have felt so blessed to care for these little heroes.
Little did I know when I chose this career, that I would one day be one of these parents cheering on a little warrior and how it would change my life forever. My heroes’ battle began with a problem we discovered when I was only 10 weeks pregnant. His organs hadn’t formed correctly and he had a problem that was likely not survivable. We made a heart wrenching decision to try to give him all opportunities while in the womb for survival, but tried to accept that the odds were not in his favor.
On September 9, 2010, I too became the parent of a premature infant. Miles was born at 32 weeks with prune belly syndrome. I was now the scared cheerleader at the bedside hoping and praying he would be okay. I do this for a living and practice very similar to my partners who were caring for him, but I still had trouble remembering what they were saying to me, what the plan was for the day. I was busy trying to do all I could do for him without letting my fear take over, but many times it did. He required early surgery and survived it. He was able to wean off the ventilator. He was able to start some feeds and tolerated them fairly well after a week of trouble. I was starting to have more and more hope along with less and less fear. However, the better he got, the more problems we found out he had. Over the first two weeks, it seemed like for every bit of good news, there was also bad news. I had counseled hundreds of parents about prematurity being a roller coaster ride, but was not prepared for it myself.
Miles is four now! He shouldn’t have survived past 2. Not only is he surviving, he is thriving. He’s thriving with lots of challenges, but is still thriving. We have lots of daily medical procedures that we have to do to keep him as healthy possible. He has many limitations on his activity, but continues to exceed all expectations any of us had for him. Our medical life at home is still filled with ups and downs as we have many urgent and emergent changes that need intervention. We also have the joy of watching him do things that should be physically and medically impossible. We have the appreciation of every step of progress that he makes and how hard he works for it.
For me, world prematurity awareness day is about these little heroes. About their amazing ability to fight, to defy odds, and to be joyful despite all they face. It’s also about their families. Once you are the parent of a premature infant or medical child, you never outgrow that. You always carry with you a little more fear, a little more worry, and a little more joy for their milestones. They may outgrow their prematurity, but our lives are forever changed by it. We are now in a club that only other parents of premature infants can understand.
Lori Nesslein is a neonatologist in Fort Worth, Texas. She works directly with infants and families during their stay in the NICU. Lori is the mother of Brynn, age 9, Mason, age 6 and Miles, age 4 who was born prematurely at 32 weeks with prune belly syndrome.