By Charisse N. Montgomery
At 33 weeks pregnant, my husband and I went to the ultrasound clinic for a routine follow-up ultrasound. Because I have fibroids, as about 60% of Black women do, the doctors kept a close eye on their growth throughout my pregnancy. This appointment, however, revealed more than fibroids. Having been through thorough ultrasounds for the past four months, I noticed a difference when the ultrasound tech continued to take photos of my baby’s spine and brain. Her silence and her concentration on these areas were a red flag that something might not be okay. Not really wanting to know the answer, I asked, “Should his spine be curved like that?”
“That’s what I’m checking,” she answered. “I’m going to have a doctor come and look.”
This is when my heart sank. I grabbed for my husband’s hand as we waited for what seemed like an eternity for the doctor to come in. The doctor took the ultrasound wand, made some noises as he conducted his own review, and told us to meet him in his office. This, we knew, was not a good thing.
The doctor explained to us that our baby had a condition called kyphosis, a curvature of the spine, which is a form of scoliosis. In addition, the baby seemed not to be swallowing amniotic fluid as he should, which led to a greater concern about his development. It was like the floor had dropped from beneath us. After 33 weeks of anticipating a healthy baby and experiencing an uneventful and even blissful pregnancy, we had a new reality to face, one that could end with a baby in our arms…or not; one that could potentially end with a healthy child or a child with serious disabilities. There is no What to Expect book for this. At 33 weeks, there is nothing we can do but wait; there is no blueprint, no answer for the question “WHY?”
The baby would be delivered by c-section at 38 weeks, leaving us one month to obsess, fear, cry, hope, pray and love this baby the way he deserves to be loved, despite the fact that we’re terrified about the potential outcomes. But beneath it all, there is some peace. I know that together, my husband and I can conquer anything. I know that we will love our son no matter what. I know that we can draw strength from one another and from our faith to carry us through any obstacle.
Our beautiful son was born on August 12, 2011. While early tests were inconclusive, it now appears that while his brain functions quite normally, he has a form of muscular dystrophy. He has spent the first few weeks of his life in the NICU, and he will require a great deal of care once we take him home. I am beginning to understand the fears and the concerns of parents who have children with disabilities, including my own parents who have a daughter (my sister) with a similar disorder. We want to do what is best for our son, and we love him infinitely. Instead of dwelling in fear, we revel in the joys of parenthood and the progress he continues to make each day. We stare at him for hours and dote on every new thing he does. As with our fertility issues, I have found very few resources for black families dealing with children with disabilities, and for that same reason, I look forward to sharing our journey with you so that we can become such a resource.
Thank you for keeping our little boy in your prayers...and yes, that's him in the photo. Isn't he gorgeous?!