Congenital Heart Block

Hi, I was just wondering if anyone else has a child with complete heart block, who also lives in Canada?

11 Comments

parents

by Tracey_E - 2012-12-04 03:12:15

We don't have many parents here. Most of them end to ask a question then disappear rather than become part of the community. We have quite a few teens and adults with CCHB (myself included) and many members from Canada. Hopefully we between us we can answer your questions!

I am From Canada :)

by mantarle - 2012-12-04 09:12:12

I Have compete heart block ... But I am 30. I had 6 open heart surgeries when I was 2 months old that lead me to eventually have complete heart block. I have a perfectly normal and Happy life , even with all my heart problems I managed to have 4 beautiful children.

rare

by Tracey_E - 2012-12-05 04:12:16

We are very rare!! I never met anyone else with the same thing until I found this community here. I'm 46, btw, so that's a lot of years of being the only one. I've never had a dr with another patient like me, either.

Check these out
https://www.facebook.com/groups/6220852980/
https://www.facebook.com/groups/2209916610/

There used to be a yahoo group called heartblockkids but I have no idea if it's still around. Most yahoo groups kinda died off.

The owner of this site is Canadian and was born with heart defects, but not CCHB.

Hi

by Jobo81 - 2012-12-05 07:12:52

My baby was diagnosed with heart block when i was 19 weeks pregnant. He was paced at 5 days, he's 9 months now and is amazing. He's doing so well & I'm so proud of him.
I too have found there is a lack of support - finding this site has been a god send.
I was doing well coping with things but in the last month or so I've began to struggle, which is more my issue than anything to do with my son as he is developing brilliantly.
I'm not in Canada I'm in the UK but thought I'd comment as our stories sound similar.
Xx

Thanks

by concernedmama - 2012-12-05 12:12:32

Thanks for your comments. My son was diagnosed in utero at 27 weeks. He was paced when he was 2 days old and has done great ever since. I find the lack of support the hardest as it's so rare. I have found heart block groups, but no one can relate fully to my experience as they are mostly Americans and have had different experiences. It's lonely and I'm struggling with things a lot lately. Gah!

My daughter has complete heart block

by jmanuel - 2012-12-15 11:12:24

Hi
I also have a daughter with complete heart block and I live in London on Canada, she received her first pm at fifteen months after her second open heart surgery. She is now almost 13 and on her third pm and doing well!

small world

by concernedmama - 2012-12-18 10:12:28

I am also in London. Do you go to SickKids? I'm glad she's doing well! Thanks everyone for your responses. I find I have good days and then other days it hits me and I just want someone to talk to who gets it!

Child with complete heart block

by Bern - 2013-01-07 08:01:17

Hi I live in Ireland but do have a daughter with complete heart block. She has been paced since she was 13 years old and is now 17 and doing well. It is a shock when your child is diagnosed and a lot of learning to do about their condition. I was very worried in the early years but have calmed down now. I hope your child is well and coping and you can reassure them that there are other young people with the same condition and they are just getting on with life. Best wishes

mum from Ireland

by blmom - 2013-04-02 08:04:05

My don has total heart block and he is getting a pm fitted next week . Hes 18, and never been ill, dizzy etc.. the cardio is fitting it as a precaution/ preventative measure. Must say I am worried sick at yhe minute!

mum from Ireland

by blmom - 2013-04-02 08:04:06

Opps should have read *son.

MAMA FROM TX

by Rossigrl84 - 2013-09-03 02:09:45

HOW WONDERFUL TO HAVE FOUND THIS ONLINE COMMUNITY. MY 8 YR OLD SON HAS 3RD DEGREE CONGENITAL HEART BLOCK. BORN AT 28 WEEKS VIA EMERGENCY C-SEC. THEY THOUGHT HIS HEART RATE WAS LOW DUE TO DISTRESS. HE WAS PACED AT 6 MONTHS OLD. THEN HIS LEAD BROKE ABOUT 14 MONTHS LATER AND HE WAS PACED AGAIN. 2 WEEKS LATER HIS INCISIONS CAME OPEN AND PLASTIC SURGEON JOINED HIS ELECTROPHYSIOLOGIST TO REMOVE PM, IRRIGATE/CLEAN AND RE IMPLANT IT. ITS BEEN ABOUT 6.5 YRS NOW AND HIS PM BATTERY IS WINDING DOWN. HE WILL HAVE THIS PM REPLACED IN DECEMBER. I FOUND THE ABOVE MENTIONED FACEBOOK GROUPS AND JOINED THEM!

You know you're wired when...

Your device makes you win at the slot machines.

Member Quotes

I consider my device to be so reliable, that I never think about a failure.