Brandan's Story
Our story begins on June 20, 2003. Our fourth child and our first boy was born at 10 lbs and 3 oz. I had been worried the whole pregnancy that something was not right but kept getting told everything was fine even though I never had a Level II ultrasound. At this time it wasn't considered standard procedure unless you were a high risk patient. All of my other tests had come back negative for neural tube defects or down syndrome. When Brandan was born he just didn't act like a 10 pound baby should. He wouldn't eat, he didn't want to be touched. All my little boy wanted was to be left alone in his bassinet. Finally when we got to our third hospital in just 24 hours of Brandan's life we were told he had Hypoplastic Left Heart Syndrome. We were given 3 options. We could do a 3 stage surgery, a heart transplant or we could do compassionate care.
Brandan has currently had all 3 stages which consist of the Norwood, the Glenn and then the Fontan. He had the Norwood at 5 days old with a 3 week hospital stay after that. We then went home until January of 2004 and he was supposed to have his Glenn but they found out that his aortic arch was narrowed and needed to be widened. They ballooned that and we had to wait 6-8 weeks for the Glenn. Brandan then had the Glenn at 8 months in March of 2004. Amazingly enough after just a 2 day hospital stay he was discharged directly from the intensive care unit. The third surgery didn't come until Brandan was 4 years old on June 21, 2007 because we just couldn't get him to 30 pounds and his heart was doing well enough that he could wait. He had another 3 week hospital stay after this one.
Brandan is six years old now and doing okay. He has his ups and downs not only from the cardiac standpoint but how everything has taken a toll on his body. I am so proud of Brandan that words wouldn't even describe it. What we have asked him to endure in his six short years so far, no one should have to go through. Yet he does so without question and I hope that he will always remember that we made that decision because we loved him so much.
I am writing this letter not to get sympathy for Brandan but to hope that it might help to get more funding and support for CHD research. Right now when you have a child with a CHD you are told they have no idea why, it just happened. We need to change this. We need to increase research and funding so the parents and kids now might be able to finally get an answer and hopefully for the future children there may finally be a way to prevent them from having to go through the same pain and suffering.
Lori Shay, Brandan's mom