Wednesday, January 4, 2012
A few nights ago I watched this video on youtube. It was so sad it brought tears to my eyes especially because I was thinking of our son, Declan.
After having Declan, Jack and I were super excited like most parents. The day before we were leaving the hospital the doctors detected a murmur while listening to his heart. They said it was probably nothing, and all newborns had a murmur for the first day or so but they wanted to check to make sure. So they took him for about an hour, and Jack and I didn't really think much of it since they said it would probably be nothing. When they brought him back they told us they were going to have the cardiologist review the results and talk to us in the morning. They said he had a heart condition and he would explain it to us, and that we shouldn't worry. What kind of thing is that to say to parents of a newborn, of course we were worried, we cried and I was going crazy I didn't want to wait until the morning to hear more, a heart condition sounded pretty serious to me and I wanted to know what it was, but the cardiologist was gone for the day. All we could do is wait and I held Declan trying to hold back tears and hoping that he would be okay and wondering what would be in store for him.
The next morning we kept asking when the doctor would be in to talk to us, but each time they would say soon and it kept getting later and later. We were both getting extremely upset, how can you tell parents their newborn has a heart condition and just make them wait. Finally after much pestering someone at least told us what it was he has, a bicuspid aortic valve. Immediately Jack started researching it online and finding out any information possible. Basically most people have three valves, but Declan only has two. You can read more about it here or here. We were still upset after reading about it, but at least we knew what it was and read most people will still live long healthy lives with it. Later that afternoon, after what seemed like forever the cardiologist finally came in to speak with us. He made us feel better, he said we will just have to monitor it and one day he will probably need surgery, but there was no way to tell when. Some people live many years and only have one surgery while others may have to go every few years, it just depends on each individual.
At first every time I would tell people about it I couldn't help, but cry. I couldn't imagine my baby ever having surgery or being in pain. I know though we are very lucky to know about his condition, since it could be deadly without knowing. It is also not what the teenager in the video has, but it got me thinking about Declan's future and how I hope he can do everything he wants.
Now we go to the cardiologist every 3-6 months to get it checked and luckily his valves have stayed the same size. He just went for a check up today and they are still the same size which is good. If they start shrinking then we have to worry and he may need surgery. For the most part now I don't really think about his heart condition, since it hasn't affected him yet in any way. I know one day it might and there may be need for surgery, but we'll face that road if and when it comes. I am just thankful I know, so that we can monitor it and keep him as safe and healthy as possible.