my baby has a pacemaker

I have lupus and my baby has complete heart block. We brought him home but he became unwell and his heart rate dropped more. We had to rush him to hospital for a pacemaker fitted. He is getting better slowly but has some fluid on his chest. I am scared to bring him home and scared of his future with this thing in his chest. Has any new mum like me had these fears. I know i just need time to get used to it all it was a very traumatic time. I love him so much.

4 Comments

Heartblockkids

by alycat - 2008-07-12 06:07:07

I have a 15 year old son with CCHB and has had a pacemaker since he was 6 months old. I have Sjogren's Syndrome. Brendan is on his thrid pacemaker and is such a normal kid except for the battery in his chest. I know you are very, very scared, because he is so little and can't tell you when something is wrong.

There is a Yahoo group called heartblockkids and there are some great moms on there who are in the same shoes. Check us out.

Let me know if there is anything I can do to help.

Alysanne

Congratulations!

by bambi - 2008-07-12 08:07:58

Congratulations on your new baby boy! I'm sure the young moms with little ones will respond to your need for answers, support, and a willing ear like Alysanne has already done. I can imagine how upsetting this has been for you. This is a great site to come to for concerns about pacemakers no matter what end of the age spectrum you fit! My hope and wish for you, is to gradually become a little more used to your special little guy's "friend" and to enjoy every minute of being his Mom!
All the best,
Bambi

LOVE IS ALL YOU NEED

by pete - 2008-07-13 04:07:46

Technology is so advanced these days the doctors will be able to keep him in good health. He has youth on his side and it always amazes doctors just what a grip on life babies have. There is a chance that as he grows up you can become overprotective in these situations. He will want to live as normal a life as possible and the chances are his life will more of less be normal. You are in for lots of surprises as he grows up. There is no greater joy than for a mother to see her children grow up and no greater tragedy if she does not. I am certain you will be a very happy mother and everything will turn out all right for you. Cheers pete

hugs!

by Tracey_E - 2008-07-13 10:07:03

I'm so sorry you're off to a rough start with your son. Sending cyber hugs and healing prayers your way.

I haven't been in your shoes as a mom, but I was born with CCHB so I can give you the child's point of view. It was harder on my parents than it was on me, much harder. They worried endlessly (I was diagnosed way before pacers were the norm); I honestly never understood the fuss because I felt normal. It took years before it occurred to me that all kids didn't have cardiologists :o)

Know that "that thing in his chest" is an amazing piece of technology that for all intents and purposes makes our hearts work just like anyone else's. It takes some getting used to and seems scary at first, but I've always considered myself fortunate to have something so easily fixed.

I'm 41, on my 4th pacer, otherwise completely healthy with an active lifestyle and two healthy children. Your son can expect a wonderful, perfectly normal future also. When he's a little bigger, he can hug you and assure you he feels great. Until then, hang in there!

You know you're wired when...

Your kids call you Cyborg.

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