Daughter needs a pacemaker

cchb

by Tracey_E - 2023-12-21 17:38:04

I'm so sorry you are dealing with this! 

I also have congenital heart block, and I want you to know that it does not stop us from living full, healthy lives. It's scary and stressful for the parents, but as kids we don't know anything else. I grew up knowing my heart was different, but it never crossed my mind it was a bad thing. 

I'm hoping my next will be a leadless and have discussed at length with my doctor and done quite a bit of research. The first thing I would ask is, does it come out when it's time to replace. I don't know anything about ones for newborns, however the reason my doc is looking at the Abbott over the Micra for me is the Abbott is intended to come out when it's time to replace, where Micra (in adults, at least), it's intended to be left in and a new one added. He said I'm too young for that. I'm 57! I'm sure it's totally different for infants, however I would definitely ask the question about how they will handle replacement.

Also ask how many they've placed in infants. Leadless is new and not that common yet. It's harder to find follow up care with something new/uncommon. 

Please let us know what they end up choosing and how she's doing! And how you are doing. Hang in there. 

Hi and welcome 🌟

by Lavender - 2023-12-21 21:12:10

Congratulations on the birth of your darling Christmas gift. May God send the best help for your little miracle! ✨

You might get encouragement from reading the post two after yours from a young lady who's had a pacemaker since she was an infant. 😉

welcome

by dwelch - 2024-01-25 05:48:13

Happy you found us but at the same time not a club you want to be part of.  I also have CCHB, was pre-teen before they found it (Back then you didnt get an ekg everytime you sneezed like today, certainly not a birth) first pacer at 19.  five devices 36 years with pacers.

I also do not know about this specific device and perhaps that is your only question for us.  While your are not in a unique situation, unfortunately this happens to many parents, you will likely not meet any of these nor even folks like Tracey_E and I as we are unicorns but there are many of us.  Anyway, it is very rare that we see a parent or even someone who started that young who participates on this site.  As with having CCHB and being diagnosed as a child but monitored for years before my first device and knowing that they now look for it pre-birth,  I just wish there were more parents or pacer patients that start as children that would find their way here and share and for example be able to compare notes with you and maybe have a child with that device.

(<whisper>....with only a few exceptions, lol, listen what Tracey_E says)

I would also say ask about how long the device has been out, how many patients, how long does the battery last both predicted and if it is some short period of time like a few years are the devices matching the prediction.  I dont know if you are able to, if even a place exists, to go somewhere where a doc does infant pacers, hopefully you are able to do that and this is not a first time for your doc.

My thoughts are with you and your child.  Pacemakers are not what the media and movies portray them as.  Heart block if you have to have a medical condition is one of the good ones as it is trivial to fix with a pacer.  You are completely normal at that point to run and jump and play.

Thank you for finding us sorry we dont have the answer.