Erik Quinn: The Heart of a Family: Gage

Wednesday, November 29, 2006

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

7 Comments:

Blogger Aspen said...

I am sure like everyone else; my heart skipped a beat after reading the news. It is terrifying to me what is happening with Daven's heart. We too have a small town medical system and while I have faith in their knowledge, I will always understand that I know more about WS than most of the doctors we see.

My prayers are with Gage and his family. I will also say an extra prayer for all the beautiful WS children I know. May God place his hands over their little bodies and hearts. Protect them and help each child to grow and be strong and healthy.

LOVE YOU!

9:16 AM  
Blogger Aspen said...

I am sure like everyone else; my heart skipped a beat after reading the news. It is terrifying to me what is happening with Daven's heart. We too have a small town medical system and while I have faith in their knowledge, I will always understand that I know more about WS than most of the doctors we see.

My prayers are with Gage and his family. I will also say an extra prayer for all the beautiful WS children I know. May God place his hands over their little bodies and hearts. Protect them and help each child to grow and be strong and healthy.

LOVE YOU!

9:17 AM  
Anonymous Anonymous said...

It gets me everytime...I hate even reading about it, it certianly hits home eh

9:24 AM  
Blogger Kerry said...

I couldn't believe it when I heard the news about Gage - it does hit so close to home it gave me a little chill. Living close enough to Boston has given us the oppotunity to go to Children's Hospital for every little appt - even Brady's pedi wants us to have his blood drawn there. It does reassure me that we are with some fo the very best docs, but I also realize I now feel like we can't move anywhere.

I know I talk more about Brady's delays than his health, I guess it is easier that way.

4:31 AM  
Blogger Nicole said...

I have been meaning to comment to you all week and just haven't. Our thoughts and prayers are with Gage and his family. Thanks for providing the link to his photo. What a sweet, handsome little guy he is.

Thank you also for your blog "Can". Wow, is all I can say. It completely inspires me and makes me want to be the best person that I can. It took me three tries to get through the video to be able to watch it. Needless to say I have been stepping away from the computer a lot this week and taking some deep breaths to compose myself.
Take care.

12:11 PM  
Blogger Kim, Grandma to Ava,ws said...

My heart sank when I read about Gage. Honestly, it was like a slap in the face. I have been very busy pretending that everything is GREAT, and that Ava's issues are resolved. I can hardly bear to think about it. I pray that our sweet kids can weather whatever storms come their way.

Thanks for another great post, Nancy. You always make me think (and feel).

5:15 PM  
Blogger Leesa said...

nancy,

I have read about medical care being very local. Certain localities practice differently, and as you have stated, sometimes small towns cannot attract the best docs/equipment.

Child Magazine lists the best hospitals every other year (I think they will next publish it in April 07), and volumes of procedures seems to be important, especially with delicate operations.

I am praying for Gage!

6:25 AM  

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