January 2, 2002 our lives crumbled with these words, “I’m sorry, but your baby is showing some characteristics of Down syndrome”. Yep, about 3 hours after our beautiful baby was born, the delivery doctor came into our room and sat at the foot of my bed. He then placed his hand on my leg and uttered those gut-wrenching words. Those words that no new mother ever imagines she will hear. Paul, (my husband) got into an argument with the doctor. Paul flat out told him, “You’re crazy”.
Within a few hours a Geneticist was called to our room. She proceeded to check our baby out. She told us that she didn’t really see anything alarming. Her comment of a low birth weight (5lbs 11oz) and Carly’s toes didn’t really make much sense to me then. Now it does. Anyway, I told the Genetics doc to get the tests ordered and get it over with.
It was about 10 agonizing days waiting at home. Then, a phone call came. The blood results were in. Yes, I was told over the telephone. Our beautiful little girl was indeed a child born with Down syndrome or as some say, T-21. Our world was in a tailspin. Spiraling out of control. I couldn’t eat, sleep, or shower. I was a wreck. Thank God that only lasted about a week. I then jumped into mommy mode.
When Carly was 3 weeks old, we had all pretty much come to terms with the diagnosis of Down syndrome. Then, we were sent to UofM for a routine ECHO of her heart. The doctor’s had already assured us her heart was fine, but they wanted a baseline. Off we went. When we were told of Carly’s severe heart defect, my knees went out from under me. It was something none of us were expecting to hear. For us, that was a harder diagnosis to hear than Down syndrome.
A few weeks out from that appointment, we met with a heart surgeon. He informed us that Carly would die as an infant if they couldn’t fix her heart. She was a complex case and not all the cardio doc’s were on board with what the surgeon thought he could accomplish. It was in our hands whether or not she had the surgery. Of course, by this time our love for her had grown more than we ever thought it could have. Yes, we wanted the surgery. We wanted to give her a chance to live.
As I said, Carly’s heart defect was quite complex. She had two very large holes in her heart. No mitral valve. And her left ventricle was almost non-existent, but it was there. (It was expected to grow, if her heart were functioning properly) The surgeon had a plan and told us what he wanted to do. First, the holes were fixable. Second, he would construct a mitral valve by using Carly’s own tissue. Using part of the tricuspid valve in the process. His hopes were; the mitral valve would function with little to moderate leakage. If so, her heart would be repaired and considered a success. If the surgeon couldn’t get enough tissue, then they would have to close her up and let her be. Unfixed.
To be continued….
5 days ago