I had no idea anything was amiss until I reached 26 weeks gestation and went to the emergency room with abnormal bleeding. An ultrasound revealed the abnormalities; a subsequent amniocentesis revealed the cause. Most cases of Trisomy 13 are not inerited; either the egg or the sperm ends up with an extra copy of chromosome 13 as a result of random events. And it is very rare, occurring only once in every 16,000 newborns.
Before the technician became aware of the situation, though, she revealed that the baby was female. A little girl! I had about two minutes of pure joy, contemplating the fact that I was going to have the daughter I had always wanted.
But once the diagnosis was made, I was gently encouraged to terminate the pregnancy, because even if it were to run its course, and the baby were to survive birth, she wasn't likely to live more than a few days. Only a tiny percentage of Trisomy 13 babies make it to their first birthday.
However, that was a decision I didn't believe was mine to make; I continued with the pregnancy. Instead of being put on bed rest, I was instructed to go about my normal routine. Some folks prayed for a miracle, and encouraged me to do the same; others were sure I was being punished for some horrible transgression. I did my best to ignore them. I got up every morning, put one foot in front of the other, and survived each day.
The first question I asked postpartum was, "Is she alive?" And she was. I didn't know whether to feel happy or sad about that. It was very strange. I wanted my baby, but I knew she didn't stand a chance.
Everything changed once I held her in my arms. I didn't want to let go. I wanted to keep that little girl forever. I would have done anything to make her healthy and whole.
We were sent home just a few hours later. Mackenzie was tiny and blue and had many physical challenges. She was unable to nurse and had to be fed with a tube. It was all rather overwhelming. My parents and my then-husband's parents came and stayed with us for the duration. Our pediatrician made house calls and hospice came to assist.
Mom and Dad with Mackenzie
Josh with Mackenzie
Despite my fears, I made the decision to get pregnant one more time, and two years later Nathan was born, normal and healthy. For that I am eternally thankful. But I think about my daughter every day, and wonder about the young woman she would have grown up to be. Happy Birthday, Mackenzie. I love you. I miss you.