Thursday, June 4, 2009

The girl has heart! Part 1!

There are two types of Atrioventricular Canal Defect, partial and complete. The partial form only involves the two upper chambers of the heart and the complete form allows blood to flow freely among all four chambers. They both allow extra blood to flow to the lungs. Linden was diagnosed with complete AV canal defect when I was 20 weeks pregnant. My quad-screen that I had done at 18 weeks came back with an elevated risk for Down Syndrome, so my OB scheduled a Level II ultrasound with a maternal-fetal doctor. I wasn't really worried about it because I knew that test had a chance of being wrong and I was only 23! At that appointment, the doctor was looking anything that could be considered a soft marker for Down Syndrome and that's how he discovered what was wrong with her heart. 50% of people with DS have heart defects. She happened to be one of the 50%. We were extremely worried about the fact that our small baby would need such a huge surgery soon after she was born. It was suggested that I have an amnio to rule out any chromosomal abnormalities, but that came with a risk of miscarriage and we already loved our daughter more than anything so we continued on focusing on finding a team of doctors to care for her after she was born.

After that appointment, I started doing tons of online research about what to expect. Poor weight gain, cyanosis, fatigue, difficulty breathing, and lack of appetite were some of the side effects of her particular defect. I was so sad that I was going to have this sick baby. I pictured a skinny sickly baby. I had dreams where she stopped breathing and turned blue. It was awful. At least I had about 5 more months research this and prepare for her. We ended up finding a wonderful pediatric cardiologist that made me feel so much better about putting my daughter in his care.

Linden was born September 1, 2008 at 37 weeks gestation (5lbs 9.2oz) right in the middle of Hurricane Gustav (I will post my birth story later). She came out very pink and screaming! They whisked her off to the NICU to run tests and to give her an echocardiogram to make sure all was the same with her heart and according to them, it was.

Part 2 will follow soon.

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