You may not know, but congenital heart defects are the number-one birth defect that affects approximately one in every 125 babies every year in the United States alone.
We have been personally affected by a CHD, though Sam's is not a very common one. Sam has an "electrical" issue, whereas most of these CHDs are "plumbing."
There is a very large community out there with children who have been affected by a CHD. One way that we found support was through www.littlehearts.org, an online support system who lead us to a friend whose son also has an electrical defect, as well as a plumbing issue.
Sam was most recently affected by his heart condition (Brugada Syndrome) in August 2009, when he had to have surgery to move a lead that wasn't reading correctly. His defibrillator has been functioning perfectly ever since.
Sam's very rare condition affects him when he has over 101.8F fever, however recently he has sustained over 103F for long periods of time with no repercussions. We are all hopeful that God has healed his heart! Only time will tell, but we will continue to take precautions. One way that we know his heart is not fully healed is when he has an electrolyte imbalance. When that occurs, his heart can go into an arrhythmia and his defibrillator will shock him if it is sustained for longer than 30 out of 45 heartbeats.
Even though we didn't know about his condition when he was born, but only found out when he was not quite 11 months-old, I wouldn't change anything. He is an amazing child.
I hope that we can bring some awareness to CHD this week, and especially Brugada Syndrome.
3 comments:
I just found out that my son Elias has Brugada syndrome. Your story and your son is an inspiration. Be healthy, Sheri
Your son's story is an inspiration, I just found our my 21 month old son has Brugada syndrome. I'm having a hard time dealing with this.
If you'll post your email address, I won't publish it and I'll email you. I know it's difficult...
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