Inherited heart condition

[Shamrock24]

Does anyone have a child with an inherited heart condition?

I'm feeling very alone and would like to know if there's anyone out there in a similar position.

Not inherited no, but my DC does have congenital heart condition. I also have friends who have a inherited heart condition passed through the family. It is touch, but you are not alone. There are an enormous number of conditions, they are more common that anyone realizes and vary in how they may affect your child. There are also groups set up for people who have to deal with similar conditions, I belong to a fb group for the condition my DC has.

Thanks for your reply. It's really hard isn't it?
I know the gene that is defected in my son's case and there's not many known cases. I fully believe there are probably lots of people with the same gene but most people wouldn't know until they have a problem. I found a fb group but there's only 30 people it it and they're all in USA.

I hope your child is doing ok.

Do you mind saying what the gene does?

My DC was born with a physical abnormality in the heart arteries (TGA). It had to be corrected by surgery. Sometimes the fix is the last intervention they will ever need with that condition, sometimes not. My DC has been unlucky and has had to have more. They are sill under consultant review every 6 months and may need further interventions. They have some side effects, and take medication, but on the whole have few symptoms. My DC is a very happy, healthy seeming child, and it is most likely we would see symptoms if the condition was worsening before it became critical which is reassuring. But it is still a constant worry for us parents. If some activities may have a negative effect, any sign of symptom of illness is dreaded as a sign that heart health is declining etc. Myself and DCs Dad have both received counseling which has helped a lot.

My friend with an inherited problem has a condition which will not show warning signs. Which I know is a massive worry to her personally regarding her own health and then doubly so in regards to her children.

That must be such a worry and your child has been through so much already. It is reassuring to know that you’ll likely to see signs if it was progressing.

My son has inherited a defected gene which can cause various heart issues. The main ones seem to be conduction issues and holes in the heart. I believe it’s a fairly new discovery so they’ll still elsrnjng. I’ve googled lots of things which terrify me but of course any case studies regarding this gene are all ones where they’ve had lots of problems.

my ex husband passed the gene on but we didn’t know he had it when we had children. My ex has competed heart block so had a pacemaker fitted in his 30s and also has holes in his heart. I think he may have other issues also now but we haven’t had contact for a couple of years.

my son has first degree heart block and partial right brundle branch block. He’s not having any treatment of intervention and he’s screened annually. I’ve been told to look out for any symptoms such as dizziness or fainting which could be a sign the heart block has progressed. He was last seen in September and there was no change on his ecg from the one 16 months prior. We’re waiting on a 24 hour monitor and stress test. He also had another echo and at the appointment the doctor said everything was fine but when the letter came through a month later, there were comments that caused me to worry. Of course I googled it again and that made me worry more.

im finding it really hard to deal with the constant anxiety. They can’t say if he’ll experience more problems in the future and need a pacemaker or if it will stay as it is.
I really do feel like I’m in a state of panic all the time.

how do you cope?

My 3yo has inherited a gene mutation from me causing a higher chance of aortic dissection, they don’t know why and it’s very rare with only 2 families being found with it in the UK. Waiting for genetic testing to see if my baby has it.

The guilty I’m feeling is horrendous but I inherited it from my dad, who inherited it from his Mum, and he felt the same guilt.

I used to be worried for myself but now I’m just worried for my babies

@Thefaceofboe I'm so sorry to hear that. It must be such a worry. What is the process if you've inherited the mutation? Do they monitor you regularly and is there treatment involved?

I can completely understand the guilt. I didn't pass on the gene myself but I still feel huge guilt about it. My ex used to have 3 yearly heart check-ups due to a slow heart rate but the doctors always said it was nothing to worry about. It wasn't until after I'd had two children that we found out it was an issue and was genetic. I now wish we'd pushed for better care in those early days so I would've known before having children.

My youngest hasn't inherited the mutation.

How are you and your Dad? Have you had any issues? I've been told that even when a mutated gene is passed down, it can still vary hugely regarding what problems, if any, it may cause.

We have been living with my DCs condition since I was 12 weeks pregnant. We cope because we have no choice.

Therapy (which was offered to us by my DCs heart team) has been really useful. I have done some CBT beside through talking therapies.

Living in the moment and enjoying life is key. You never know what is around the corner, we see it as a reminder to really live and take nothing for granted.

You can self refer to nhs talking therapies if the anxiety is getting to you, and I recommend it.

They monitor regularly and if it gets to a certain point, an aortic repair or replacement would be needed. I’m 31 and I’ve had no issues but my dad had his aortic valve replaced at 62 and my brother had his replaced at 34, lots of others in the family have had the op too. So far 50% of the people who have inherited it have had a problem, the other 50% are just sitting ducks really waiting to see what will happen.

If you have no symptoms you have yearly scans but it’s no where near enough imo.

It’s hard so I understand how you feel