At just 20 weeks pregnant, Ryan and I anxiously awaited are results of our anatomy scan of are baby boy. We were told there was a abnormality found in his heart called a echogenic focus. We were told we needed to see a specialist to see what if anything this would mean for our baby's future. We went that same day to a perinatal specialist to be evaluated. They again saw the echogenic focus and thought this may be a sign of a rhabdomyoma. They wanted us to be seen by a cardiologist.
The next week we went back and were evaluated by a echocardiogram by Dr. Clauss, and at that time she saw the same thing. She told us that our son may possibly have a disease called Tuberous Sclerosis. We were sent to Children's national medical center in Washington, D.C for numerous tests to see for sure what was wrong with Collin. We had a brain MRI, echocardiogram, ultrasound performed. Finally at the end of the day we were told that Collin has severe aortic stenosis, and severe mitral valve stenosis. We were told we could have him in our home town and deliver naturally, but soon after birth Collin would have to be transported by medivac to Children's for close observation.
Ryan and I decided to deliver closer to Children's, so we had Dr. Downing, who I may I say is an outstanding doctor, deliver our baby at the Washington Hospital Center in D.C., since it is right next door to Children's. That next week I went for a follow-up echocardiogram on Collin's heart, not thinking anything new would arise, it sure did! Dr. Clauss sat me down and told me that Collins heart looked even worse than the week before. She said he had coarctation, and was developing a heart condition called Hypoplastic Left Heart Syndrome (HLHS). She informed me that a highly skilled team of physicians in Boston, MA were performing a experimental surgery on these babies to help fix their hearts so they would not have to face the 3 open heart surgeries that are performed today to fix HLHS. This surgery had to be done before 26 weeks of pregnancy, and here I was 21-22 weeks pregnant. After many phone conversations with all the doctors in Boston, our doctor, family and friends, Ryan and I decided to go through with the surgery.
We went to Boston at 25 weeks pregnant and had the incredibly detailed valvuplasty performed on Collin's heart. It was one of the hardest decisions that I ever had to make. I knew though that if there was anything I could do to help Collin, this was the ONLY possible thing we could try. The surgery went well, Collin's aortic valve was dilated to help prevent him from needing the 3 open heart surgeries.
After Boston we returned home and waited a VERY long 13 weeks for my delivery. They decided to induce me at 38 weeks so that the Children's team of physicians would be ready for Collin's arrival.
Collin was born July 9, 2009 at 8:35pm. He weighed 7lbs 3.4oz, and was 21.5" long. I ended up needing a emergency c-section due to Collin's heart rate dropping extremely low. He was immediately transported to Children's after birth for evaluation. The doctors decided that Collin would best benefit from having the 3 stage surgeries. Collin had his first open heart surgery on July 14, and did very well, they said Collin was there "Rock star baby. On November 6, 2009 Collin had his second open heart surgery and did very well.
We now are spending every moment with our lil' angel; he just turned one and is getting in to EVERYTHING!!!! His 3rd surgery is due to be performed in March/April of 2011.
