Premature birth is a distinct possibility for a significant number of current and would-be American parents. According to March of Dimes statistics, one in nine babies – or 11 percent – are born prematurely in the United States every year.
But in Newark, the rate of premature birth is one in six – or 15 percent – with black infants experiencing the highest rate of premature birth, at 18 percent. And of those premature births in Newark, about one in four are “very pre-term,” defined as live births at less than 32 weeks of pregnancy (the figure is 3.5 percent of all live births in the city).
Newark education advocate Kaleena Berryman went into labor at just 24 weeks. It wasn’t long ago that doctors thought babies born just two weeks earlier — at 22 weeks — arrived in the world too early to resuscitate. The unexpectedly early arrival proved a frightening time for Berryman, whose baby boy Jharid debuted two months before his scheduled baby shower.
But with faith, the support of family, friends, and nurses, information she acquired on her own, and an indomitable will to see her baby boy survive and thrive, she saw him through his most touch-and-go moments, and is now enjoying seeing him enrolled in school. She has also resolved to become a resource for other parents who have experienced the premature births of their children, including launching a Facebook group and blog, both entitled “Praying 4 My Preemie,” and authoring a book entitled Stronger Than We Thought. Below, Berryman shares what she learned along her journey, and how she built a support system that she still relies on to provide a top-tier quality of life for her son.
When it was clear that Jharid would be born prematurely, how did you feel in those initial moments, and what information and support helped you through those moments in real-time?
I didn’t find out that Jharid would be born prematurely until the last minute. I was in labor by the time I got to the emergency room, and the doctors told me that I was 24 weeks and asked if I wanted them to try and save my baby. I was so unprepared and uninformed about prematurity that I just stared at the doctor and basically said, “What other options are there?” He didn’t really explain what saving him would mean, but I knew that if it was possible, I wanted them to do it.
Jharid in an incubator. He was born at just 24 weeks old.
I don’t think any mother is prepared for premature labor. And for me, no one in my family had given birth to a micro preemie or had a child spend a long time in the NICU (neonatal intensive care unit). So in that moment, I went into a state of mourning for a child I had never met. I did not expect for him to be able to live. I think every preemie mother is engulfed in sadness and a deep feeling of guilt in the moment after their baby is born so little and so sick.
Before we see our baby for the first time, the instinct is often to disconnect. The doctors and nurses rush the baby away and you don’t get to hold him or her, so you kind of just experience motherhood moment-to-moment, and a part of your mind tells you to just let it go now.
But then you get to the NICU and you see your baby, and there is no greater desire than for that child to live and leave that NICU.
It’s on from there. What got me through it was being surrounded by family and friends who were praying and speaking strength and life over my son, even when I couldn’t find the words. After a day or two once I was discharged, I felt days of deep, dark despair. I prayed for God to remove the sadness so that I could be a mother. I went to church and literally lay in front of the altar. Soon after with the help of my best friend Danielle, who walked with me for two weeks through the experience, and our parents, who showed us how to have faith, the despair slowly began to lift. My best friend Swiyyah brought me a journal on the day he was born, and I began to write. That writing helped me create my book and build my willpower.
You say that connecting with other parents helped you gain a sense of normalcy. How did you find them, and what did they teach you?
At first, the nurses were far more help in gaining a sense of normalcy than anyone else. His dad and I sat by my son’s incubator 15 hours a day. Once he was transferred to St. Joseph’s [Regional Medical Center] in Paterson, I was able to bond with the nurses who, honestly, became like family. They showed me how to be a mother to a one-pound sick baby. They were our lifeline, and they wanted him to leave the hospital just like we did.
Kaleena poses with Jharid. He’s currently enrolled in a school that serves children with developmental delays.
In the beginning and for the first several weeks, the doctors reminded us that Jharid had so many obstacles to overcome that he may not live. The nurses restored our confidence after every conversation with the doctors, and told us to pray and to believe. They were amazing.
Once I got settled into the NICU, I began to see parent groups and support groups for preemie moms and families. The first group I found was Life after NICU on Facebook. I began to talk with other mothers and fathers daily. Among them I was no longer a minority; they related to my experience. However, I came to realize that the voice of the African-American mother in prematurity was almost non-existent. I began writing, and also started my Facebook page and blog, both entitled “Praying 4 My Preemie”.
You seem to triumph in every moment with your son. What words of assurance can you give to moms of premature babies who fear the road ahead? What joys can they look forward to?
I would tell moms of premature babies that it isn’t their fault. That God determines birthdays and not us, and that the road and the journey of our children is their testimony to live and our testimony to witness.
One thing is certain: we can no longer experience premature birth in silence, especially in cities like Newark, where so many children are born premature. When we look at our school system with hundreds of children who were born early, and many of whom have special needs like my son who now has cerebral palsy.
Most premature births cannot be prevented once detected, but we can encourage mothers to pay closer attention to their bodies, and empower women to understand what prematurity means, that children can survive, and how they can survive the NICU. And also to encourage women to take great care of their reproductive system and try their best to make sure that their body is able to give birth to a healthy baby. For instance, I had fibroids and a Vitamin D deficiency, and while studies are being done to prove a link, I believe that there is one.
When my friends and associates have been faced with prematurity since Jharid’s birth, they have been more empowered because I’ve shared my journey. We have to do more of that. November is National Prematurity Awareness Month, so preemie moms and dads, let’s get to work!
What motivated you to author Stronger Than We Thought?
I have always been the writer who had nothing to write about. My life had been fairly easy up until Jharid’s birth, and great writers often say that you have to go through something in order to have something to say, to give to the world.
My son is the greatest story I hope to ever know, and he has given me more pain and more joy than I could have ever imagined. I had to turn it into words and, more importantly, I had to turn the miracle into poetry.
I wrote a poem I called “On The Day You Were Born,” and it went viral in the preemie community. Poetry is a language that everyone understands, so I got to work on writing a book that would put the entire journey — birth to discharge, from the NICU and life after — into words. I wanted to make something that brings women, honestly, a great deal of shame, into something beautiful. Preemie moms make the best moms because we know what it is to almost lose our children. We learned how to love them better because of it.
What resources have you found in the area that have helped you and Jharid along both of your journey since his birth?
Well there honestly aren’t enough resources. Mothers and fathers need a space where they can go and talk about the experience and seek consultation as they make the transition from NICU parent to, in many cases, special needs parents.
Thankfully, there is Early Intervention, which is a state program that provides amazing therapy to preemie children from the moment they leave the hospital. Jharid has received occupational therapy, physical therapy, vision therapy, and developmental intervention. Having those professionals in our home every week made such a difference. They also transition us into school, and he is now enrolled at a great school serving only kids with developmental delays.
The greatest resource by far: our family and friends. Our mothers and my father and all of my best friends who had boys soon after I became the mom of a boy — we’re all in this together. Our village of aunties and uncles and cousins are amazing. I’m also grateful for the love that comes to Jharid daily from social media. I shared the journey and, as a result, so many people are praying for him. So many people are always praying for my preemie. That has truly made the biggest difference.
Kaleena K. Berryman is an education advocate, youth mentor, community organizer and writer. Born and raised in the city of Newark, Kaleena graduated with honors from Arts High School, as a Television Communications major. After being awarded a Presidential Scholarship to William Paterson University, Kaleena earned a Bachelor’s degree in Communication in 2004, with a minor in African American & Caribbean Studies. In January 2011, she earned a Master’s degree in Public Administration from Rutgers University-Newark.
Currently, she is the Program Coordinator for the Abbott Leadership Institute at Rutgers University-Newark. ALI’s mission is to teach education advocacy and family engagement skills to parents, educators, community leaders and students in Newark, NJ. She also serves as the advocacy coach for the institute’s Youth Media Symposium, and is President for the Organization of Black Faculty and Staff at Rutgers-Newark.
In 2013, Kaleena co-founded Newark Circle of Sisters, a 1,000-member-and-growing organization of women in the city of Newark who provide service scholarships to Newark women at all stages in their advanced education pursuits. After the birth of her son in 2012, Kaleena took up the cause of prematurity awareness, and launched her blog, www.praying4mypreemie.com, where she helps to empower parents of preemies with support, information and encouragement.