So most of my friends know the worry I & my husband went through in the first year of Nathan's life..
1 in 100 babies will be born with a Congenital Heart Defect. We had 2 in 100. Nathan, and his twin who died in utero. We can only assume he died of a more severe heart defect than what it was discovered Nathan had.
Nathan was born in October 2009. He was diagnosed with a heart murmur at 5 days old at his first appointment at his pediatrician. He was then seen at the hospital by the Chief of Pediatrics 2 weeks later for his circumcision, the Chief of Pediatrics agreed with our pediatrician that Nathan had a murmur, and immediately signed Nathan up to for an appointment with a Dr from Sick Kids which was 2 weeks after that.
Nathan had his first Cardiologist appointment at 1 month, 3 days old. After a clinic appointment, Nathan's Pediatric Cardiologist immediately got him in for an ECHO (ultrasound of the heart). Diagnosed with 2 moderate VSDs (essentially 2 medium sized holes in his heart, between 2 chambers in his heart).
Suffice to say, it was really weird being in the adult Cardiology department, and seeing this tiny 1 month old having an echo.
The holes weren't large enough to require surgery, and since his growth was good, we were sent home with the words "If he goes blue, bring him in to your ER telling them he has heart defects." I can't say I enjoyed hearing those words. Frankly, for the next several months I'd randomly check on him while he was sleeping as I was afraid he'd experience a problem and need to be brought to the hospital. Its really only in the last few months I've stopped worrying about this.
We have a great pediatrician, and between diagnosing him with a murmur, and the first ECHO at a month old, we had biweekly appointments so he could keep an eye on it to make sure it wasn't getting worse. After the ECHO, we were on weekly checkups for a while.. Weekly turned into bimonthly, turned into monthly, and after his 1st birthday and his 2nd ECHO, we're now at no additional appointments being necessary.
Add in several extra appointments other stuff (such as falling on his head, and acting oddly for hours on end, resulting in a quick drive to the Pedi to check his head and heart), and its been a busy year.
At Nathan's 1 year appointment with his Cardiologist, we were glad to hear 1 of 2 of the VSDs had 'spontaneously closed' with the other VSD leaking such a tiny amount, that we will only need a clinic appointment for his 2nd birthday.
We were lucky in the fact that Nathan didn't have a more severe heart defect. Many defects require fixing via a cath lab procedure, or via open heart surgery.
In this day and age, I'm still shocked at people asking why a parent would 'allow' their child to have 'unnecessary' open-heart surgery. Shockingly enough, many think the parent is overreacting, and somehow managed to convince a Dr to operate on their child. They don't seem to understand that without this surgery, the child will die. No ifs, ands, or buts.
Unfortunately, Canada doesn't really have a CHD (Congenital Heart Defect) Awareness program/group (that I was able to find anyways), however the US has a pretty good one.
If you're interested in reading more, or need a support group here are some great links:
Info:
http://www.chdspeaks.org/
Online support groups:
http://www.facebook.com/1in100
http://community.babycenter.com/groups/a5055/babies_and_children_with_heart_problems
