The Color of Prematurity Awareness

My name is Kaleena Berryman, I am an African American woman, and last year I gave birth to my son prematurely.
Kaleena Berryman, pic
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 and 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 them. 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.

After 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 in them.
me and Jay
This is not attributed to 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 It’s a Preemie Thing, Kasey Matthews, Life After NICU and Preemie Babies 101, 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.

breathe

African 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, 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 http://www.praying4mypreemie.com. 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 underrepresented in the story.

awareness

You may not be able to run a support group or become a preemie advocate. But I invite you to share your story. Become a part of the “Color of Prematurity” Campaign today. Share your story with us at kaleenaberryman@gmail.com. At the end of the month, in honor of National Prematurity Awareness, we will share all of the stories and faces of women of color and their children born before 36 weeks. And we will encourage you to share with your friends. Let’s lend our face to the cause.

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.

Here are links to excellent resources for preemie parents. While you craft your story, start here.

Praying4MyPreemie:https://www.facebook.com/ThrivingPreemies

Life After NICUhttps://www.facebook.com/lifeafterNICU?hc_location=stream

It’s a Preemie Thing https://www.facebook.com/ItsaPreemieThing

Preemie Babies 101https://www.facebook.com/preemiebabies101

Preemie Support and Awareness: https://www.facebook.com/PreemieSupportandAwareness

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breatheTo All My Preemie Parents - We Are Stronger than we Thought

Poem from the book Stronger Than We Thought: Poetry for the Preemie Mom’s Journey. Download from Amazon onto any computer or electronic device!

I Am A Mom With Special Needs

sonshine2

I Am a Mom with Special Needs

I need
A heart that is resilient
Faith that never wavers
Coffee and hopeful conversation
With friends who carry tissue

I need moments of intoxicating laughter
And uninterrupted normalcy
Family with praying hands
And legs that don’t bend with the wind

I need strong shoulders to lean on
And people who ignore the differences
People who celebrate the little things
And easily lose track of time

I need plans that aren’t cemented
And a calendar with extra days
A boss who’s willing to work with me
A husband who’s willing to share

I need intuition that’s fool proof
A certainty that challenges
Any expert or evaluator
Who dare stand in our way

I need tear ducts that don’t have filters
Eyes that don’t betray me
Pillows that keep secrets
And pages to remind me

That I am still the same me
Just now, with so much more to need
With so much more to lose
And a little one to live for

Kaleena Berryman, pic

Poetry from Praying4MyPreemie
At Praying4MyPreemie, we specialize in poetry written to celebrate the miracles that come with our children, through our personalization poetry service, Poetically Yours. Give us your story, sentiments, dedications, and we will create a beautiful poem to honor your child, at a reasonable price. There are no cards that tell our story, this poem will live on forever! First birthday – Coming home from the hospital – birth – even loss, we can capture the words of your heart. Email us at kaleenaberryman@gmail.com for more information.

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