Gage

It's strange to be part of a family and have laid eyes on very few members of it. I have only met two kids with WS and their families. In the WS family, we miss each other terribly without having met. We communicate through blogging, e-mail, and phone calls. We hear news through a surprisingly efficient WS grapevine, most of which is based on the WSA message board. I read the message board less and less as time goes on and my need for it diminishes, but I check it probably once a week. My closer WS friends just reported the news of a 2-1/2-year-old little boy named Gage, and the news shocked us all, as it's pretty hard not to look at our own kids and face what WS means to us all in even a purely medical sense upon hearing it. It's absolutely terrifying.

Gage went in for a cardiac cath this month, as his aorta was becoming narrow, an extremely common defect in Williams. The doctors were checking to see if surgery was required. His blood pressure suddenly dropped, and his heart stopped. He responded to resuscitation, but his heart stopped two additional times, requiring shocks and life support. After a couple of days, they tried to take him off life support but were unsuccessful. Open heart surgery was performed while Gage was on life support, a risky but thankfully successful procedure. He developed bilateral pneumonia after the surgery from being on his back for a week, and I am assuming treatment for that was successfully initiated. His parents noticed that his left side wasn't moving, and a CT scan revealed that he had suffered a stroke. His mother reports that he had just taken his first steps before they entered the hospital, and now he is partially paralyzed, so, even in the best case scenario, they must start over in that sense. Because he is heavily sedated, the damage to his brain is an unknown at this point in time.

This news makes me question the medical care we have received here in this small town, and my trust in the medical community as a whole was shaken long ago. Even under the best of care like Gage is receiving, things go wrong. For 17 months we were told that Erik was "normal" when his calcium levels were probably sky high and frying his kidneys from this undiagnosed syndrome. We have never had his kidneys checked, and now I wonder if there is permanent damage there. His doctor talked of calcium supplementation at one visit, the last thing you would give a child with WS. The report of his heart and vessels being reportedly normal came after much study by his physician and didn't seem very reassuring to me at the time. We were told that there was possibly some narrowing in one area. My God, what does that mean? She told us that things were fine but that she couldn't guarantee things wouldn't worsen, either. When I smile and tell people that Erik's heart and vessels are fine, I know that these defects often worsen and that we have no idea what the future may hold. For the most part, the doctors here seem to have no interest in keeping tabs on Erik's condition or checking blood levels for any reason. Again, I am told that things are "fine." I have seen my friends go through heart caths and surgery in their children. I am reassured that our next echocardiogram will be performed next year. I suppose what bothers me the most about this story is that this little boy is about Erik's age, and I can't fathom the pain and suffering they are enduring right now.

It's just upsetting to see people suffer like this and realize it could all happen to you. I think that's where a lot of us are right now. I am beyond thankful our son has been healthy to this point, but I always have the fear of the unknown in the back of my mind and wonder if there is enough being done for him.

We are all holding Gage and his family in our thoughts and prayers. Hopefully, we will receive good news soon about his condition soon.

A photo of Gage (he's adorable):

http://www.wsf.org/family/photoalbum/photo_a-j/gage.htm