The Silent Suffering of Preemie Parents

Giving birth to a baby as small as your hand is traumatic. Why in the world aren’t medical professionals acting like it? Why are preemie parents suffering in silence?

There is nothing that can prepare a mother or father to see their child’s life hang in the balance before it even begins. Whether you see preterm birth coming or not, your heart completely breaks when you realize that you will deliver your child months before their due date. A third of preterm births have no known cause according to a recent study by the March of Dimes, therefore most mothers and fathers don’t even know what went wrong. But no matter the reason a baby is born premature, all parents of preemies end up in the same place, the Neonatal Intensive Care Unit, staring into incubators at babies too fragile to be in the world. Staining hospital floors with their tears. Hoping that their baby is stronger than they look.

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I barely remember my son’s birth. We went from rushing to the hospital because I was in excruciating pain, to laying down in a hospital bed with elevated feet. Then came the news that at 23 weeks, I would have to stay in that bed for my baby to live. No one really asked how my fiancé and I were doing, a psychologist never came in to check on me – all attention was on the unborn baby. I was at a complete loss of hope and words. Partly in denial, partly scared, partly numb. Within a few days it went from bed rest for twelve weeks to “Good Morning Mommy, we have to take the baby now”. At 24 weeks. 16 weeks early. I wasn’t prepared. Even laying there, I wasn’t prepared.

After an emergency C-section Jharid Jr was born, one pound five ounces. He looked horrible. Small. Sick. I was bombarded with sadness, visitors, congratulations balloons and guilt. Fear. Uncertainty. One minute he was in my stomach and the next he was in a see through box hooked up to machines. A few days later his belly was black from necrotizing enterocolitis (NEC). It was so abnormal. While most mothers work to recover after a C-section I was up within a day at his side. At one week old he was transferred to a new hospital. There was no time to recover. He was fighting the stomach infection, grade three brain bleeds and weak lungs. His feeds were stopped.  The grandparents worried about US, mom and dad, and surely our family and friends were concerned. But we were all far more worried about him. We didn’t matter. We just wanted our baby to live.

A few days later I attended my post-delivery checkup. I was asked about my C-section, the baby, and possibly if I was stressed. I remember the doctor saying that my blood pressure was high. Of course it was, I had a baby born, dying. My gynecologist (a different doctor had delivered Jharid due to the emergency), never called at all. In the weeks to come, my mental health was never a topic of discussion. Thankfully, the love and support of our family and friends and the NICU nurses helped us to make it through. But we should have seen a professional.

I now know that for those first few weeks I was in shock. I had never known such despair in my entire life. We had been through a TRAUMA. A Trauma that still to this day, six years later, has gone untreated. And in a survey of preemie parents on my site, 91 percent of respondents stated that no medical professional had talked to them about PTSD following their baby’s birth. How is that not mandatory?

According to the National Institute for Mental Health, post-traumatic stress disorder (PTSD) “is a disorder that develops in some people who have experienced a shocking, scary, or dangerous event. Fear triggers many split-second changes in the body to help defend against danger or to avoid it. This “fight-or-flight” response is a typical reaction meant to protect a person from harm. Those who continue to experience problems may be diagnosed with PTSD. People who have PTSD may feel stressed or frightened even when they are not in danger.”

Is this not the perfect description of a preemie mom after the birth of her baby? We can’t avoid the NICU while our child is there, but after discharge we avoid going back. The smell of a hospital can send us into a panic. For years we still hear the beep of monitors. Many of us have severe anxiety. Months after the NICU, we live in fear of sickness, RSV, and even the death of our children. We watch them like hawks, jump at the sounds of a sneeze and are hesitant to leave them with others. Some of our actions are rooted in necessary caution, but much of it exists long after they are home and even longer after it is necessary. Oh and the triggers – baby showers, big pregnant bellies, and newborns! That is, if your child survives. If your child does not make it home, that is an entirely different trauma and still, often goes improperly treated.

It is time for us to come to term with the fact that we are failing preemie parents by not paying attention to their mental health needs. Medical professionals, the change begins with you. If you encounter a mother who has given birth to a baby preterm, please inquire about her mental state and refer her to a doctor that can provide support. Speak with dad as well; they have to watch mom and baby go through the process of preterm childbirth. Screening for PTSD should become a mandatory component to the post-delivery checkup process and even the first visit to the pediatrician. Even before the mom leaves the NICU without her baby for the first time, she should be given information about PTSD.

I started my organization, the Preemie Parents Club, to provide support to moms while in the NICU so that they wouldn’t have to suffer alone. Our meetings are therapeutic, to counter the triggers of PTSD. To prepare moms and dads for the journey to come. Preemie parents, we need to speak up about the silent suffering that we endure after preterm birth. It will empower others. It will give our suffering, a name.

To those who care about preemies and their parents, please join the #ComingtoTerm Movement, calling for all of us to #CometoTerm with the fact that prematurity awareness and prevention must include the mental health of preemie parents. Email us at preemieparentsclub@gmail.com or share your story using the hashtag #ComingtoTerm.

My name is Kaleena Berryman, and I am coming to term with the fact that after my son was born at 24 weeks, I suffered silently with PTSD. I made it to the other side. And you can to.

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