Cleft mitral valve

[MrsAyl]

Hi.

Long time reader first time poster.

Had a hospital appointment today as at my DS 6 week check the doctor though they heard a murmur so we were referred to the Paediatric Cardiology department. That appointment was today.

After a series of tests it turns out that my beautiful 6 month son has a cleft mitral valve.

I don’t know what to think currently, at the moment it’s all I can think about. I feel like I’ve condemned him to a future of seriously massive surgery and if I’m honest I don’t really understand what cleft mitral valve is and how it will effect him and google is no help.

In the following I am going to be 100% honest so please don’t judge me I just need to say it as I can’t say it to my husband.

It’s not fair my half sister who has a heart condition and was told that her children (she has 2) could be born with a heart condition are both perfectly fine (the heart defect came from my step fathers side of the family) . Me on the other hand. No history not even worried about and then we get told this. I just want to cry! I want to curl up in a ball and cry until I can’t cry any more. I feel like I’ve failed, the one thing I was supposed to do - grow him and make sure he grows well I didn’t do. And I feel that his whole childhood and things will be building up to this massive surgery.

I just feel like a crap mummy and so horribly guilty for messing up.

Is there anyone out there whose been in the same position or has any advice or know what cleft mitral valve actually is!

Xxxx

Dead of night here so will say more in the morning. I have a prolapsed mitral valve.. what have the cardiologists said re the future?

Hi,

They have said he will either need a valve repair or replacement some time in the future. It could be when he’s 18 or 48 but he will need something
To be done.

At the moment he wants to monitor It with 6 monthly echos and ECGS

Ok, well, heart valve replacement is open heart surgery, however I know at least three people who have had mitral valve replacements and who are now living normal lives. In my own case my heart condition is slightly more complicated and as such I wasn’t able to have full heart valve replacement, however I had a less invasive procedure earlier this year called a mitraclip where they go in through the groin and insert a clip into the heart to partially repair the valve.

I went from someone unable to leave my house, who at one point was told that my only chance of survival was a heart transplant but that due to pulmonary hypertension I wouldn’t be eligible for one, to someone who is able to now lead a virtually normal life. In seven weeks since I was discharged from hospital my step count has gone from around 1500 a day to between 7/9000 a day. I am back looking for work and hope to not have to look back. I do have hypertrophic cardiomyopathy and as such I may still need a transplant one day and the valve repair means my pressure has come down and I am therefor likely to be accepted if the time comes, however that is a bridge I` will cross only when/if I have to.

Please don’t blame yourself. Any one of us could end up going down the route of needing heart surgery one day. All I would say is to make sure that they keep on top of any progression so that they can act as soon as things start to get worse, if they get worse.

The stay in hospital is around six days, and he will have a scar, but there’s no reason why he can’t or won’t live a normal life going forward. HTH.

You need to give yourself time, it has nothing to do with what you have done.
I have a prolapsed mitral valve discovered when I was 10, has given me no issues so far.
My mother had an aortic valve replacement when she was 72 and 11 years later it is still performing as it should. They are now doing some valve replacements by going through the groin using a catheter so no open heart surgery.
My teen daughter was diagnosed with a rare heart defect, just to add to the leaking aortic valve we already new about, just before Xmas and is at this time being monitored yearly.
He will be fine and it is good he he is going to be kept an eye on.