When I was pregnant with Brendan I had prenatal testing done and an amniocentesis to confirm that Brendan did indeed have Down syndrome. After the diagnosis I had appointments every month, and towards the end of the pregnancy, every week, for an ultrasound. Babies with Down syndrome are at a higher risk for having intestinal blockages and heart defects. Did you know that 50% of babies with Down syndrome have a heart defect?
After all of these ultrasounds everything looked to be fine, no problems, at least that is what we all thought. Sure enough, when Brendan was born he was everything but fine. He was blue, purple really if you ask me, but I only saw his foot! The truth was that Brendan had a heart defect, and the NICU Dr.'s at the hospital where he was born couldn't even tell us what it was.
The problem wasn't just that he had a heart defect, his lungs were very sick. When Brendan was born we aspirated very thick meconium, add to that my Group B strep which I was not able to get antibiotics for prior to delivery. He now had 3 strikes against him.
Brendan was medflighted to a hospital 3 hours away. Bryan and I met up with him there in the middle of the night and some poor resident doctor was trying to explain what was going on. I heard nothing that this guy was telling me, it didn't make any sense, and he also wasn't trying to hard to have it make sense to us.
The next morning, one of the most fabulous pediatric cardiologists walked into my room and sat down and very slowly explained to Bryan and I what was wrong with our little Brendan. He presented us with this diagram of what Brendan's heart looked like.
The big things we had to worry about was 1. the gaping hole between the 2 bottom chambers, and 2. the narrowing of his pulmonary valve. Those are the 2 that I remember, there were 2 other defects, but I knew that those weren't the big problems at the moment. He had a congenital heart defect called Tetralogy of Fallot, or TOF.
He took get care in explaining the defects and what the plan of action was going to be. He knew that we were shell shocked, to say the least. I think it took me much longer to grasp the gravity of the situation, we truly didn't know if we were going to bring our baby home, and all I wanted to do was run into the NICU next to his bed and pick him up, because a mother's arm should be able to fix anything. I remember the Doctor walking out of the room, and I broke down because I knew I couldn't fix this and I immediately felt that this was all my fault, I could have done something different.
Many frustrating days and nights later, it was decided that since Brendan's lungs were not recovering because of his heart and something had to be done. He was then transported to the local Children's Hospital where the hope was that a procedure in the Cath lab would open up his Pulmonary Valve enough so that he would have better blood flow to his lungs, but it wasn't a certainity.
The procedure in the Cath Lab took about 4 hours or so, but if you ask me it felt like an entire day. I remember the Dr coming out of the room with a big smile on her face, and she said, I think we just solved our little problem for the time being. Sure enough, the next day, we had a whole new baby, his eyes were open, he looked at us and of course we were finally able to hold him in our arms.
We had finally made progress! We went from this on day one:
We knew that there were more surgeries to come, just when was out of our control.
After we made it through this and Brendan's lungs were finally on the road to recovery from the worst case of pneumonia that the NICU had seen in quite a while.
6 months later Brendan had his first open heart surgery to repair the TOF. The pictures aren't pretty..
..but 4 days later, it was amazing!
There is at least one more surgery in his future, possibly 2. We still hold our breaths every 6 months when we have to go for the cardiology check up, and so far so good.
So there you go, now you know about just one of the CHD that strike 1 in every 100 babies a year.
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