9 year old with heart block

Hello there, my lovely little girl who's 9, born with complete heart block has been at a steady 56 bpm unpaced since she was born! However on Saturday she was crying and I asked what was wrong and she said that she was worried she was going to die in her sleep because her heart was too slow. 

Monday morning came and I phoned the consultant just for reassurance really, her appointment was due in November, they were lovely and just said could I bring her in on Tuesday and they will see her straight away. Amazing, off we went on Tuesday, she's asymptomatic so assumed it would be our usual appointment and she would feel better after asking some questions.

Heart rate on ECG was 44bpm, aorta is more dilated than the last appointment, but function of heart was ok, I'm passed my self with worry. She asked the doctor her questions and he was very lovely and reassuring and for the first time in all the appointments weve had, he mentioned pacemaker to her. They put her on a 24 hour ECG monitor which we returned on Wednesday so now I'm very very anxiously waiting for a phonecall with results.

Anyone with kids with a pacemaker? How quick did any of you guys get the appointment to go in and get pacemaker fitted. In my mind we are getting a phonecall and getting straight in... However that may be my worried mind making up ideas of how this all happens.

Sorry for long winded post, I'm quite struggling with the whole process even though we've know about it since before she was born, looking for anyone who has been there and done it I guess!

Thank you for reading xx

4 Comments

Hi🌺

by Lavender - 2023-10-21 22:00:20

Your little girl sounds so wise! I'm glad you have each other. I read your other post from when she was born. As you know, even babies get pacemakers. She won't be their first case. It is good that you and her medical team are being proactive. 
 

I can tell you that we never stop worrying about our kids-no matter how old they get. Then there are grandchildren to worry over. It's a lifetime of pleasures as well as concerns. 😉

A 24 hour monitor might not show a long enough run of heartbeats to catch any pauses. My 24 hour one caught nothing. A thirty day one caught my heart pauses within the first ten days. But, it's a start to have them check this. I wouldn't expect a real quick run to get a pacemaker because they would already have called you if there was an emergency. 

sorry about your child

by new to pace.... - 2023-10-22 06:41:39

it would help if you would for now put in your location. As sometimes our answers to your concerns, depends on your location.  The rest you can fill in  after she gets her pacemaker.

new to pace

Brave girl

by Aberdeen - 2023-10-22 17:31:41

I am sure all will go well for your little girl! Recently a one year old received a pacemaker. Let us know how she gets on!

Wisdom

by piglet22 - 2023-10-24 09:30:27

Rest assured that even the most hardened of us CHB patients get their anxiety moments.

I sometimes lie in bed at 4-am and the pulse is slow and you wait for the next one...

It's good that it's being seen to soon and assure her that she will feel a lot better, but there's a lot to go through for someone so young.

It may or may not be permanent, but look on the bright side and remember that these electrical heart problems are unwanted, but very fixable.

There might be some tears, but it's soon over.

You know you're wired when...

You have a little piece of high-tech in your chest.

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