By: Cristina Moreno, Bilingual Outreach Specialist, Penfield Children’s Center

I will be the first to admit that until my son was born I had never really given any thought to what it meant to be the parent of a premature baby. As a medical interpreter I had some experience working with families who had children in the NICU, but I had never had the opportunity to work with a family once the child was discharged, or had any idea what follow up care would look like for a preemie. I knew that premature babies would need special care while they were in the hospital, but I had little understanding of the long-term effects of prematurity.

When my son was born, my husband and I did what many doctors advise against, yet many parents do- we Googled everything we could possibly find about prematurity. Of course, this habit caused a lot of unnecessary stress because while there are a lot of positive stories about preemies who have grown into healthy active kids, the tendency is to dwell on the stories of hardship and struggle. We were on a mission to learn everything we could about prematurity, but there are so many factors that can contribute to a premature birth, that finding the answers we were looking for seemed impossible.

Will he be ok?

What will happen now?

We wanted to find something, anything, that could reassure us that everything would be OK. The answer we most often received was, “You have to wait and see.”  While most of the doctors and nurses were very hopeful, one conversation with the neonatologist validated our concerns. Because he was born 9 weeks early, our son is at a higher risk of having cerebral palsy, and since the condition often affects motor skills, it can go undiagnosed until children are older and parents or doctors realize that there are issues with their mobility.

Ever since he was born, my son has been making amazing progress and he surprises us at every turn, but the concerns are always present. His early check-ups often led to a follow-up with one specialist or another to rule out problems such as heart murmurs or pupil irregularities. In our home, every milestone met gets a mini celebration, and while I feel incredibly lucky that he has been growing as well as he has, I also know that it will be several years before we will know for sure whether his prematurity has had any long term effects on his health. We try not to dwell much on the possibility of him having a condition such as cerebral palsy, but every time he begins to lag behind the expected developmental timeline, the worries settle in again.

Sometimes people think that a premature baby is just a smaller version of one who is born full term, especially when they see a baby who is considered “late pre-term”, a baby born anywhere from three to six weeks early. However, the reality is that premature babies, even those who are late term, have a lot of catching up to do. The last weeks or even months of growth and development that full term babies get to experience in the womb take place in the outside world for a preemie. So even if the baby looks like they are “just small” from the outside, their internal systems are working hard to develop and thrive in their new environment.

It is important to remember that we should not expect a preterm baby to reach developmental milestones at the same time they would if they were full term. A preterm baby goes by an adjusted developmental timeline, meaning that their developmental age is determined by their due date, not their actual birth date. For example, my son is now six months old but because he was born two months early, his adjusted age is four months. When we went to the doctor for his six month appointment, they evaluated his progress based on things a four month old could do, not a six month old.

While I am proud that my son is healthy, happy, and sometimes even reaches milestones earlier than expected, there are times that I still find myself worrying about what can happen in the future.  I try to remind myself that holding my breath as we wait and see where the next few years take us is too much time spent stressing, and I did enough of that while he was in the NICU. For now, all I can do is reassure myself that he is right on track, encourage him to continue to learn and grow, and remember the only thing that truly matters is I have a child I love and who loves me back.

Have you had a child (or known a child) who was in the NICU? What steps did you take to keep worries at bay?