The Color of Prematurity Awareness

February 2, 2015

headshotMy name is Kaleena Berryman, I am an African American woman, and three years ago I gave birth to my son prematurely.

If you were to judge the face of prematurity by the color of preemie awareness, you would think it was a “white woman’s issue.” You would assume that there are very few women of color birthing babies too soon; that America’s NICUs are homogenous, from the nurses who care for babies born between 17 and 4 weeks early, to the parents who sit expectantly next to incubators, waiting on miracles.

And your assumptions would be wrong, and if left unchecked, a critical barrier to successful outcomes for our children.

When I became a preemie mom after having my son 16 weeks early, I had no idea what to do with it. Honestly, I did not know that it was possible, that a child could be born that early and survive. I didn’t know NICUs existed, and to my knowledge my family was preemie-free. When the doctors asked me before going into the delivery room if I wanted them to try and save my son, I did not know how to answer. I asked, “What is the other option?” I had no idea what saving my son would involve, and how much “saving” he would actually need.

holdAfter getting settled into our circumstance, I sought information, support, and guidance to help both my baby and myself thrive through the experience. I came across a plethora of online support groups, Facebook pages, blogs, and books that were not only helpful but amazingly reassuring. And although I had much in common with the brilliant mothers and fathers behind these lifelines, our experiences, our stories, our faces – were different. Quite frankly, I could not, and did not, see myself, or my son, in them.

This is not to take away from the resilient parents who were changed enough by the preemie journey to take up the mission of helping other parents through it. They have all welcomed me with open arms. If it were not for blessings like Preemie Babies 101, Hand to Hold, and Life After NICU, I would have gotten lost along the way. There is no “glass ceiling” in preemie awareness, because motherhood trumps race any day. The things we have seen our children go through – the struggles of our babies, forever bond us.

But after the messages of encouragement, health care tips, and best practices are shared, there is an immediate need to tackle prematurity prevention. Prematurity can happen to anyone. But right now, it is more likely to happen to black children. And that message needs to come from all impacted families, including families of color. At some point, we decided that our stories were not worth telling. We have to now make a conscious decision to transform that.

African American mothers are 1.5 times more likely than white mothers to give birth prematurely. These disparities exist even when age, education, and other demographics are considered, according to the National Center for Health Statistics. In my hometown of Newark, NJ, 20% of children are born prematurely and at a rate 66% higher than that of white women living in the city. The disparity is attributed to many factors, including lack of prenatal care, poverty, and stress.

But there is more to it.

I believe that our lack of voice is making matters far worse. This has to change. Why? We have to save babies. Children born prematurely are far more likely to have physical and mental disabilities. They have higher rates of asthma and other health issues. They are more likely to become blind, deaf, or have developmental delays. When we look at our urban classrooms, we see the alarming number of children designated as special needs and we bring attention to it.  We offer solutions like early childhood education and the need for parents to be more involved. But rarely is the question asked, “Were they born premature?” In a city where 20% of children are born early – educators, parents, community – we must add that question to the discussion, and prematurity prevention to the list of solutions. We have to be just as diligent about prematurity awareness in communities of color and the disparities that come along with it, as we are for breast cancer and AIDS awareness. Not all preemies survive. Not all stories turn out beautiful. It is our obligation to tell our truth and inspire as many people as we can.

coverphotoAfrican American mothers in the preemie community must come out of hiding. We experience prematurity, we get through it, and we move on. We keep the lessons to ourselves. After giving birth, people were quick to offer awesome stories about how children in their family, my family, were born small and were now big and strong and running around as if nothing happened. I would have appreciated that story more if it had come a little earlier. Maybe then, when I felt the pain of my son coming at six months, I would have fought harder when the doctor told me everything was okay.

This is why I started Praying for My Preemie. I want mothers to take the warning signs seriously. I want mothers to take it easy, to get excellent prenatal care, to relax. I want African American women to know that this exists, that your child can be born small enough to fit in the palm of your hand. I need them to know it can be devastating and you should do all you can to prevent it. No longer should we be over-represented in the statistics, yet under-represented in the story.

I am a preemie mom. A working mom. And an African American mom. All three give me a unique purpose, perspective, and set of challenges. And there are thousands of women out there who share these descriptors with me. It is time the world knows we exist.