First Reactions (with a little bit of background)

As any parent knows, hearing news about your child's health that isn't "normal" will make your heart sink. When I was 18 weeks pregnant with my first child, Frederick, I went in for a regularly scheduled ultrasound to determine the sex of the baby. However, things didn't go as planned. He wasn't by any means bashful, so they were able to tell us conclusively he was a boy. I really don't think they had to try to get that picture. What the biggest surprise was that day, however, was not the sex, but that he was going to be born with an Omphalocele, which means that some of his small intestine was still left in a sac (encased in the umbilical cord) outside of his body. We had plenty of time to digest this information before he was born, and we understood all of the different things that could be wrong with him.

Needless to say we were well prepared for our bundle of joy that was the largest baby in the NICU at 7lbs and 15oz. He looked like a moose in there. He came out almost perfect, just a few minor things after the omphalocele, and with an excellent prognosis. So two surgeries later he is a very active and playful 5 year old boy with no signs of any childhood illness, but a swirly bellybutton and a small scar.

Two years after his birth I gave birth to a beautiful healthy boy, Joseph. He was my worry-free baby. Wish I could say the same now! He is a beautiful kid, but whooo he is trouble, just as most three year olds are.

Two years after his birth....to the date, I gave birth to my beautiful baby girl, Madigan. We didn't know until the day after she was born that she had a heart murmur. No cause for alarm then, my family has many heart problems, most of them no cause for concern until adulthood, and my oldest has a murmur with no real known origin.

My sister, however, had a major heart defect. She had a Complete AV Communis (or Canal Defect). For this reason they called in the cardiologists to evaluate her and then a geneticist. Genetically, she is a "normal" girl, but she has a Incomplete AV Communis with a Cleft Mitral Valve. It is almost the same heart defect as my sister just less severe, which was great news. I figured if they did my sister's surgery 23 years ago and it went well that all would be fine. They told me that would need surgery before was school age. I think most of that day I spent being "strong" or numb, and then my husband left to get a shower and I sobbed for about an hour. You go over in your head what you may have done wrong and you wonder what you could have done differently, and there is nothing. I felt even worse for my husband, because in his family they don't have these problems and there was no telling where is head was.

Eventually, I got to the point that I didn't really think about her heart problem until a check up came around; every 3 months, then every 6 months. So it was easy to put the heart condition in the back of my mind. We were told by the second doctors appointment that she was going to have to have surgery at around two years old. Which still seems a long way off when she was only 6 months.

We just recently went to the Cardiologist and they said that it's time to do surgery, and she is only 19 months. It took me aback to hear them say that they would be ready to operate as early as mid December and no later than February. I asked them to wait until after the holidays and they feel comfortable doing that so that at least is a relief.