I was 20 weeks pregnant when we found out that our son was diagnosed with Ventriculomegaly. It’s a condition in which the fluid-spilled spaces in a fetus’s brain (the ventricles) are larger than usual, according to the Cleveland Clinic. The ventricles widen or expand because cerebrospinal fluid becomes trapped in them, instead of flowing around the brain and spinal cord before getting reabsorbed.
At the time I felt as though I had done something wrong. I asked a lot of questions but unfortunately the doctors didn’t have many answers for me without doing risky testing. I joined a Facebook support group, and the stories were truly inspiring. They got me through extremely emotional days.
We opted to wait until our son was born to conduct an MRI to see the cause. Then, I went into labor five weeks early. He was born weighing 6 pounds and 4 ounces, and all my worries went away. I did not care what his diagnosis was; he was perfect to me. He was sent to the NICU to get an MRI and we waited anxiously for the results.
The results showed that he had had a brain bleed in utero, which caused extra fluid build-up. We were informed by the Neurologist that we would have to wait six months to see if the condition would create more buildup or resolve itself. The doctors were optimistic.
Our son had to stay in the NICU that night for observation.
During that night, his oxygen level dropped along with his blood sugar level, and he was at risk for jaundice. We were informed that he would have to stay in the NICU for a few more days for observation. This was the news we did not want to hear, but we knew he was in good hands.
When I was discharged, I spent most of the day cradling him in the NICU. The nurses helped with feeding time, encouraged me through breast feeding, provided nutritious meals, and provided long term resources. We were assigned a case worker who explained the resources we could utilize during the NICU stay. Some of these included a discount on food in the cafeteria, free housing a few minutes away from the hospital, and free parking. Knowing that we had access to these resources took a huge financial burden off our shoulders.
The nurses kept in constant contact with us the whole time.
When I went home for a few hours, the nurses communicated with me through an app that showed when he had a diaper change, how much he drank, and what his oxygen level was. I loved being updated about my child’s health while I went home to spend some quality time with our oldest son. It helped me feel at ease that I could click into the app and find out how he was doing. I felt less guilty for leaving him alone.
I was not mentally prepared to spend more than a few hours away from him but because of my other son, I knew I had to make the transition from one child to two children as smooth as possible. There were a few times I went into the bathroom and silently cried, wiped my tears away, and put a smile on my face because I knew I was the family’s glue. Giving up hope was not an option.
Day by day I watched him improve with feedings, staying up for longer periods of time, diaper changes, etc. Knowing he was improving gave me the strength on the days I felt I wasn’t strong enough to get through the next.
On day five he was ready to come home, but he failed his hearing test and his oxygen level dropped again during the car seat test.
We were concerned, but we knew he was in the right place to receive the care he needed. On day six they conducted the tests again, and he passed! Our baby boy was ready to come home. Before we walked out, the hospital announced on the intercom that he had graduated from the NICU. I was nervous. Did I know how to take care of a child with special needs? Was I going to be a good mother? Would he survive through the night? Before we could take him home, we took a CPR class. Taking that class gave me the reassurance, confidence, and validation that I needed.
Being admitted to the NICU saved my child’s life.
I will never forget the special care we were given. I had a preconceived notion that NICUs were sad and scary; I could not have been more wrong. When I walked into the NICU I felt relief, warmth, and understanding.
When I walked into the NICU there were hand washing and sterilization stations set up to minimize the chances of the babies getting sick. The reassurance that they would take those precautions eased a few of my fears. What if he gets sick? What if he catches COVID? They also checked our identification before we were allowed to access the NICU hall, and that eased all of my safety concerns.
Throughout the NICU stay I was surprised by how well each shift of nurses and doctors communicated. They addressed my son by name and knew what areas he needed improvement in.
My advice to NICU parents is to celebrate the small improvements your babies make, communicate as much as possible with the staff members so everyone’s expectations are met, and speak positive words to yourself. When I had heard the word Ventriculomegaly it was scary because it was so foreign to me. According to the Cleveland Clinic, Ventriculomegaly occurs in 2 out of every 1,000 live births here in the US. That’s about 200 babies per day, yet there is very little knowledge about it.
At six months old, our baby boy was cleared of Ventriculomegaly. I share our story in hopes that it reaches a family that may feel hopeless or alone. Join support groups, share your experiences, and hug your little fighter a little bit tighter today.
–Guest submission from Jolanda Smith
