Anyone have a child with a pacemaker?

Our four year old daughter has Complete Atrioventricular Block and had her first pacemaker surgery last September. Are there any other families with children who have heart problems or pacemakers?

I can't think of any off of the top of my head but I want you to know that we can still give you support.

My ds4 has a pacemaker but not due to a heart problem.

He has Reflex Anoxic Seizures (RAS). 

When he fell over etc. he would cry for a few secs, eyes would roll and his whole body would go rigid and he would hold his breath until he would blackout. Thankfully he would start breathing again once he passed out but would be out cold for a minute or so. When he came around he would be very upset and lethargic and 9 times out of 10 would go back to sleep for a few hours. He would sometimes do this 3 times a day :(

The health professionals said he was breath holding and to ignore it. I knew better, besides, how can a 6 month old breath hold to the point of passing out?!?

We eventually found out (after several hospital tests/ scans etc) that his heart was slowing and stopping for anything up to 22 secs... very scary thought!!

We had to make the decision to have a pacemaker fitted as it is not standard procedure. Thank you NHS!!  He has had his since he was 3yrs 3 mths old (now 4yrs 7 months) and it has been an absolute godsend for us. No more blackouts!!

HTH.

noimagination:

We had to make the decision to have a pacemaker fitted as it is not standard procedure. Thank you NHS!!  He has had his since he was 3yrs 3 mths old (now 4yrs 7 months) and it has been an absolute godsend for us. No more blackouts!!

HTH.

Thank you for responding. It was such a scary experience for all of us. She has recovered well physically. We don't know any other children with pacers so its hard for her. She often says "I wish I didn't have a pacemaker" or "It's not fair that I have to have a pacemaker". I feel so bad. She is so young and already feels so different and sad. Of course you know its a lifelong process, and she will continue needing surgeries for the rest of her life. Thank you for sharing your story.

Hi...I know this is an older post but I just found it...my DS1 doesn't have a pacemaker but he was born with tetralogy of fallot.  Its a combination of a ventricular septal defect, pulmonary stenosis, overriding aorta, and right ventricular hypertrophy.  It was diagnosed by ultrasound when I was 18 weeks pregnant and "repaired" at 4 months old.  His pulmonary valve no longer functions but he is not on any meds at this time.  Just wanted to let you know I'm a "heart mom" too if you ever need someone to talk to.

Thank you for responding. I do appreciate it!!