Wednesday, May 02, 2007

My Genetic Miracle

I’d start to fall asleep and the monitors would wake me with what seemed like never-ending beeps, telling me that my soon-to-be newborn’s heartbeat was decelerating. I was told that I was only being kept for observation and that I had no reason to worry. As I fell in and out of sleep, I was constantly being reminded of where I was and why I was there—from the belts digging into my abnormally large stomach to the antiseptic smell that loomed all around me.
The next morning, the doctor came to check on me. He explained that he’d induce my labor early. He assured me that “the baby will have a better chance of survival if we take him now.” I just kept repeating, “Survival? What are you saying?” My heart started pounding incredibly hard, my mind raced, and my entire body trembled with fear.
Six hours after the doctor started the drug to induce my labor, it was time to deliver my baby. I was rushed to the delivery room with pain and fear battling against each other. The pain was so great that I’d pass out and when I came to, only seconds had gone by. My body shook involuntarily from head to toe. Why I was so frightened still baffles me now. I’d done it twice before, so I knew what I was doing. I knew that in only minutes I’d be holding my third of God’s blessings, and I did just that. They let me hold him for a minute, all bundled up and beautiful. I could see his long, sparse lashes in the corners of his eyes, even though they were closed. His cheeks were so plump and pink, and his little bow tie lips were pursed. He was every mother’s dream. Then they swooped him off to the nursery. The hard part is over, or so I thought, and I fell into an exhausted sleep.
A pediatrician came in a while later to discuss my son’s exam. I could tell by the look on her face that something was wrong. She wanted him transferred to Children’s Hospital because they have specialists there to deal with newborns like my son. The rest of the discussion—“dysmorphic features,” “deformed feet,” and “hernias” was a blur.
Four hours after I gave birth we arrived at the hospital, where I was hopeful to receive some answers. Day after day and test after test I waited. A genetics specialist finally broke the news to me. She told me that my son has a chromosome deletion, a genetic disorder that is too rare to have a name. My first thought was: Did I do this? I didn’t take my vitamins the first few months because they made me sick. Several times I forgot to drink my morning orange juice. I wondered about the cold medicine I took. Why wasn’t I more careful? The geneticist apparently could tell what I was thinking, and she explained that it occurs in one out of three pregnancies. Only one out of ten thousand babies live to be born. So the simple fact that I was holding my son was truly one of God’s miracles.
The day finally came when my son was healthy enough to go home. I went through CPR, heart monitor, and car seat classes before we were released. I’d anticipated this moment from the day he was born, but it wasn’t like I expected. We were home but a few hours before I was ready to bring him back to the hospital. The heart monitor constantly sounded, his feedings were slow and tedious, and I felt that at any moment he could go into arrest and I wasn’t going to be prepared. I felt like a first-time mother, constantly worrying about every detail of his well being.
We’ve been home now for about four months and my son is just as wonderful as I ever hoped. I continue to do research on his specific chromosome deletion, and I am learning more than I ever wanted to know about genetic disorders. Sometimes I watch other parents and hope that they cherish and appreciate every milestone their child achieves. My son may never reach them. He will, however, reach his own milestones at his own pace and for that, I am grateful. When he does something as simple as a new smile or makes eye contact, my heart leaps with joy and swells with pride for his accomplishments. There are few precious gifts in the world and they should never be taken for granted.


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