I hadn't been able to think all day - I was so excited to know whether we were having a boy or girl. As I drove to our 20-week ultrasound appointment, I obsessed over the advantages and disadvantages of having a boy or girl as a first child. A brief thought entered my mind: What if something is wrong? But it left just as quickly. That couldn't happen to me.
My husband met me at the OB's office, and he videotaped as the technician told us it was a boy and showed us every little finger and toe. But she was spending a lot of time on his head. Measuring and re-measuring. The video records me asking, "Is everything okay?" She responds vaguely that it's fine, but I knew it wasn't. She said she had to go get the doctor, and he would talk with us.
The doctor told us that our little boy had hydrocephalus. Did we know what that was? "Yes, his cousin has hydrocephalus," I said. He's doing fine, right? "No, he's very severely delayed," I choked. My husband broke down completely and started sobbing like I'd never seen him before. The doctor told us we would have to see a perinatologist, and he was able to get us in right then at the doctor next door. Another ultrasound, and my husband cried while I was strangely calm, focusing on gathering information. I remember asking, "Are you sure it's spina bifida?" He was sure. He told us to go home and research it.
That night I had to call and tell my mother and mother in law, who had been excitedly waiting for my call, that it was a boy, but there was a problem. I'll never forget the despair in the way my mom said, "Oh, Colleen." Or the acceptance in the way my mother in law immediately said, "Okay, what do we need to do?" That night I couldn't stop the idea of abortion from creeping in my mind. I wished I thought it was okay, but I just didn't and couldn't justify it to myself.
I spent most of the next day in bed. I would cry awhile, then go to the computer to do a little research, then crawl back in bed and cry some more at all the scary stories and images I'd seen. Children in wheelchairs. Catheters. Surgeries. It was so unfair - this only happens to one in 1,000 babies, so why did it have to happen to my baby? Then the truth settled on me. Out of all of the parents God could have given this 1-in-1,000 baby to, he chose me! What a blessing! He knew I would be the best mother to this baby, and I determined that I was not going to let Him down.
The first thing I did was give the baby a name. Suddenly all of the names I had liked before just didn't fit. He needed a strong, meaningful name. I searched the baby name book again. Nate. That's cute-what does it mean? "A gift of God." Perfect. That's him. Naming him made him my baby instead of just a diagnosis.
Then, with my newfound sense of purpose, I went back to the computer and researched some more. I found a story about an experimental in utero surgery that some doctors thought would prevent some of the damage to the baby's spine. This was hope! I called the contact doctor right then.
Three weeks later, we were traveling to Vanderbilt Children's Hospital in Nashville, three hours from our home, to be evaluated for the study. If we qualified, we could choose whether to participate in the study. If we chose to participate, a computer would choose whether we had the prenatal surgery or postnatal repair as usual. If we were randomized to prenatal surgery, I would have the surgery within two days and have to live in Nashville until Nate was born. After an MRI and a blur of consultations, my husband and I were more confused than before. If we had the prenatal surgery, it might decrease damage to his spinal cord and improve his quality of life, but he would almost certainly be born early - maybe too early to survive. We wondered if we should just go home and not take the risk. There was no way of knowing what the best decision was, because we could not predict the future. I prayed harder than I have ever prayed in my life, and I literally heard God say, "Let Me decide." The next morning, we joined the study, and God, disguised as a computer, decided on the prenatal surgery. We were completely at peace with the decision and have never regretted it.
Two days later, I had the surgery at 23 weeks. The obstetrician made a standard c-section incision and laid my uterus on my belly. He made an incision in the uterus just large enough to see Nate's back, and the opening that exposed his spine. The neurosurgeon moved in and performed micro-surgery to repair the lesion. Then they put us back together. Recovery was difficult. Imagine recovering from a c-section, except there's a growing, kicking baby still in there. I was on bedrest at a nearby apartment, and family and friends had to take time off work to take care of me while my husband worked during the week.
Five weeks later, everything looked great. On the weekly ultrasounds, Nate was still kicking his legs, and his hydrocephalus looked okay. Then my water broke. That was one of the scariest nights of my life, thinking that Nate would be born at 28 weeks and might not survive. The doctors told me I might be able to stay pregnant, on hospital bedrest, for a few more days. Well, I was there for a tortuous but blessed month.
At 32 weeks, Nate decided he was ready to make his appearance. With my second c-section in 11 weeks, Nathaniel Austin was born at 4 pounds, 10 ounces with a little cry and was quickly whisked to the NICU. A week later, I watched with amazement and joy as he laid in his isolette and kicked the blanket off. The NICU experience was beyond difficult. Nate was doing wonderfully in every way-except that he would not wean off oxygen. After 3 1/2 weeks, we took him home, oxygen and all. He needed it for six more weeks.
Nate is nine months old now. He has far more doctor appointments than several people should have in a lifetime, because of both the spina bifida and prematurity. But he is a complete joy and a real, live miracle. His legs are strong, he does not need to be catheterized, he has no shunt, braces or casts. When I was pregnant, I had no idea how "normal" he would be! His smile is legendary, and everyone who sees him comments on it. He has the happiest personality. The fact that he has spina bifida is just one part of him, like his red hair.
I can't even put into words how much joy Nate brings into my life. He amazes me daily with what he can do. Sometimes it occurs to me that Nate doesn't yet know he has spina bifida, and so he does not let it hold him back. In fact, no one would know he had a birth defect--except that I tell his story to everyone we meet! "He has spina bifida, and look what he can do!" I'm so proud of him. He has made me stronger, closer to God, and a better person. He is truly a gift of God.
Editor's note: As Colleen's story demonstrates, please don't assume that you will automatically be offered every possible life-saving or life-enhancing option for your baby. Colleen had to do her own research to discover the MOMS program.