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Any 6 year old with OHS for aortic regurgitation? Any advise/suggestion?

(10 Posts)
Ourmiraclechild Mon 12-Feb-18 09:40:58

Any advise or information you would share regarding your experience as a parent. It’s so hard to come to terms with your child having to undergo an OHS. My 6 year old boy is due for one this summer at GOSH. It came as a big shock to us when a doctor found a heart murmur & after doing an echo found that my son has a bisucpid valve which is severely leaking ( aortic regurgitation)& needs to be repaired. Getting anxious about the whole thing. Please advise and share

NK346f2849X127d8bca260 Mon 12-Feb-18 16:14:39

He has same condition as my daughter but her regurgitation is still mild, so she is just being monitored at the moment.
Have you only recently found out about his CHD?
My mum had her BAV detected at the age of 72, really rare to get to that age with no problem.

NK346f2849X127d8bca260 Mon 12-Feb-18 16:15:52

My daughter is under GOSH, he will be in great hands, although I do understand your worry.

Ourmiraclechild Mon 12-Feb-18 18:24:43

Thanks for your message. How old is your daughter? Hope all goes well for her. They say if it’s mild then it’s nothing to worry about and needs a check up every 6 months or a year. Did she have any symptoms? Did you get urself checked for BAV? Sorry too many questions. I have been reading so much abt ghis recently and still unsure abt lot of things.
Yes we found out last month. He has been a healthy and an active boy and didn’t have any symptoms which made me very anxious. Not sure if this could have been diagonally earlier. It’s already severe and his wall is dilated.

NK346f2849X127d8bca260 Mon 12-Feb-18 22:10:02

It was picked up when she was 10, ironically she was healthy sibling control on a research project at GOSH.
She is seen every year and so far it has been stable, although she has been complaining about tiredness more recently.

I haven't got a BAV but I have a MVP, picked up when I was also 10 years old, GOSH have said that my mum's, my daughter's and mine are all connected.

Is he having valve replacement or repair?
My mum's heart muscle improved, she had some enlargement, after her operation that improved and she remains well 8 years later.
Are you on FB is so there is a very good UK based group that is very supportive.

NK346f2849X127d8bca260 Mon 12-Feb-18 22:10:39

My daughter is now 14.

Ourmiraclechild Mon 12-Feb-18 22:54:15

Touchwood! Hope all goes well for your daughter. Does she play any competitive sports? What is the research? I have heard it’s hereditary and that’s freaking me out as I have a 4 month old now. We found out about my son’s condition after she was born. We have been now referred to the cardiologist for echo. My son will be having a repair mostly. Still not sure what procedure tbh. We still are waiting for the appointment at GOSH with the consultant. Received a letter saying my son is on a waiting list for the surgery & needs to attend a pre operative assessment next month. So it’s all real & happpening quick. What is the recovery time & life after the surgery? Thanks

NK346f2849X127d8bca260 Tue 13-Feb-18 11:40:01

No restrictions on her apart from making sure she has regular dental check ups and no piercings or tattoos!
My daughter is the youngest and has five older siblings, three have been scanned and do not have any valve defects, the oldest two haven't been scanned yet.
My daughter's aortic arch is also abnormal but GOSH said it won't affect the BAV/ regurgitation.
Are they going to scan your baby?

Ourmiraclechild Tue 13-Feb-18 15:14:17

Yes GP has made a referral to the hospital. Will have to wait & see when the appointment letter arrives.

Oysterbabe Thu 15-Feb-18 18:09:42

My just turned 2 year old has a VSD and we found out today that it's started to effect the function of the aortic valve. More likely than not she'll need OHS to repair. We have to go back for another echo under sedation because she was too upset for them to get all the images. She's a very shy and sensitive little girl so I'm just beside myself with worry thinking about how she'd cope with being in hospital. She's too young to understand.
Hopefully someone who has been through it will be along shortly to share experiences with you (and me!)
I'm sorry that your son is having to go through this too.

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