This
is our son, Camden.
He
was born October 11, 2010, weighing 5lbs 11ozs. He lives in upstate
NY with his two older brothers, Cody (5) and Collin (3), who
absolutely adore him.
Camden was sent home from the hospital after 2 days with no issues or concerns after a normal pregnancy and delivery. At his 2 month check up the pediatrician found a heart murmur and sent us to a Cardiologist just to check it out. At our first appointment, that January, we got the shock of a lifetime when we were told that he had severe SVAS and mild branch pulmonary stenosis. Since Camden had not had any health issues we were not prepared for this news. We were then told he could have Williams Syndrome & needed to have a FISH test done to confirm. We received the news after a blood test was done that he was positive for Williams Syndrome.
Within the next few months his SVAS worsened and he had a cardiac catheterization done which confirmed that he needed to have the SVAS repaired right away. He went in for surgery on April 12, 2011 (he was 6 months old). Nothing can prepare a parent for their baby having open heart surgery. We were lucky though. Camden had a rough start -- having to have his chest left open due to uncontrolled bleeding. But, within 24 hours they were able to close him and he was sent home after only 5 days. Unfortunately, only three months later, they found more concerning results from his ECHO and he had to go in for another cardiac catheterization. They were hoping that what they found could be fixed with ballooning, but we were told that the problem was too extensive to be fixed with ballooning and a date was set for Camden’s second open heart surgery on July 26, 2011 -- just over three months from his first surgery.
This time they needed to reconstruct his whole aortic arch as well as a small portion at the top of the descending aorta. This was not what we wanted to hear, but again we prepared ourselves for another open heart surgery. During this procedure he would need to be taken off the bypass machine for about 45 minutes in order to completely repair the problems. They took him at 7:10am and we didn’t see him until 9:45pm. It was one of the longest days of our lives. The good news is that Camden got through this surgery even better then the first. He was able to go home again in 5 days.
Since this surgery, Camden is doing well. He still doesn’t sleep through. He is 10 months old now and can roll around the floor with ease, eat baby food, play with toys and reach for things. He doesn’t crawl yet but can sit up on his own and get into the crawling position and rock back and forth. He is receiving PT twice a week to help him meet his milestones.
Right now, he doesn’t seem to have any other health issues and his delays have been determined to be mild. At this time we take it one day at a time. Although we know that we have a long road ahead of us, we wouldn’t trade Camden for the world. He is a happy, lovable and adorable little boy and our family wouldn’t be the same without him.
We would love to hear from any parents dealing with a child who has Williams Syndrome -- especially in the Upstate NY area. There is so much to deal with and all of the unknowns can be overwhelming.
Chris and Jamie