Child with inherited heart condition

[JoW2023]

Hi everyone,

A few years ago my now ex-husband was diagnosed with an inherited heart condition. As a result he had complete heart block and a hole in the heart. He was fitted with a pacemaker in his 30s.

I took my children to be tested and my Son was found to have the same gene. He has first degree heart block and partial brundle branch block. Luckily, he does not have a hole in the heart. My daughter doesn't have the gene. My son was 10 years old when diagnosed and it was advised that he would be checked every year at Bristol children's hospital to check it has not progressed. His last tests were in August 23 and everything had remained the same. Despite the heart block, at the last tests, he didn't have an irregular heartbeat. He wore the heart monitor for 24 hours and also did the stress test on a treadmill at the hospital. He is now 13.

My issue is that I am a constant nervous wreck. I worry about him all the time. I just don't know how to stop. I'm constantly worrying that something has progressed and we don't know. He plays a lot of football which the doctor said was fine but I am anxious constantly. The doctor said that they wouldn't intervene with any treatment unless he has any symptoms or it progresses further. I'm just constantly praying that it doesnt progress. I had a meeting with the genetics specialist who said defected genes dont have the same effect in everyone so just because his Father's condition is worse, it doesn't mean his will go that way, but it might. If he says he has a headache or if his heart is racing, I just feel sick with worry. I find myself trying to check his pulse which just makes me worry further!

How do I deal with the unknown and the constant worry? Has anyone been in a similar situation?

Sorry for the long post. I just dont know where else to ask this. Thank you.

[Livelovelife56]

Good morning I wanted to cry when I read this post. In 2021 my husband while having a pre op checks for a non heart surgery, we found out he had Hypertrophic cardiomyopathy, he was advised children should be tested as this could be a genetic condition. My then 14 year old was tested and found to have the same condition abd another heart condition Aortic dilation.

My heart seem to shatter when we were told and I everything changed. You mention your constant worry, yes that is exactly how I have been since that day. I try and push the worrying away but he is my baby and again like you anything that doesn't look right with him I panic. I don't have any words of wisdom I'm afraid I just wanted to let you know I think its normal reaction wete feeling. The intensity of worry does get less but it is always there. Sorry this doesn't really help you 🫂

[JoW2023 in reply to Livelovelife56]

Thank you for your reply. I'm so sorry to hear about your son. How is he doing now?

I just feel so anxious all the time. I feel like I'm going to make myself ill at this rate. I don't want my son to know how worried I am. I don't want to stop him doing the things he would usually do unless the doctor says that's necessary. He seems to cope with it really well and doesn't seem concerned at all. I talk to my friends as whilst they do understand that I worry, they also say things like "if the doctors were concerned they'd be doing something more than just checking up on him every year or so", which I understand but that's not enough to make me less worried. He's my baby.

I feel very alone in my worry. My ex hasn't seen my son in nearly 3 years and despite him being the one who passed the gene on, he hasn't asked how he's doing in that time.

[Livelovelife56 in reply to JoW2023]

Hiya, he is well thank you. We are going for his 6 monthly check up’ next week. I know its really hard I really do I wish there was something I could share with you to help elevate your worrying. Have you thought about counselling to help ?

[Cavkingcharlesdogs3]

hi so sorry to read about your son and your anxiety which is so understandable but I just wanted to say have you tried getting support from the cardiac specialist nurses based at the children’s hospital and or the Somerville Heart Foundation which have support groups. Do hope you can reach out to get some support