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Parenting

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Open Heart Surgery 6 year old

6 replies

Sandradale330 · 08/02/2022 22:17

Hi there I'm not sure if I'm posting in the right place... My 6 year old daughter who looks fit and well, needs open heart surgery after an echo has picked up aortic regurgitation (she was born with a VSD). Is there anyone who I am able to talk to who can prepare me for what is to come? When do we break the news to my daughter (and how). She is not aware of a hole in the heart as we always banked on the miracle of it closing and not getting to this stage. How long will she be in hospital, off school, not able to partake in sports, what is the scar like and gosh just so many questions. I don't know anyone who has gone through this and we have not told grandparents or the wider family as they will stress out. I'm not sure how to be the best person for my daughter when internally I feel like everything is crumbling.

OP posts:
minipie · 08/02/2022 22:43

Hi, I have no experience but just wanted to bump for you. It must be a worry. Perhaps you could ask for a call with someone from the surgery team so they could answer your practical questions ? My guess is your DD will also want to know about these practical questions (in fact they may be the main thing for her!) so if you can get these answers it will help with explaining to her too. Best wishes

birchtree23 · 08/02/2022 22:54

I had open heart surgery at 4 and recovered brilliantly (apparently cycling a tricycle up the ward the next day) and have lived a normal life (got a 3 year old). Kids are so resilient and you will worry more than her. My condition is Fallots Tetralogy. The younger they are the better for recovery. Wish her all the best.

TheFoldOx · 08/02/2022 22:59

Hello, I don't have experience of the exact surgery you're looking at, but my eldest had OHS when he was eight days old, so I have some knowledge of how you may be feeling. Is her surgery to close her VSD only, or is she having the aortic valve repaired or replaced as well?

Bank on being in hospital for a good few days, probably a week or so. Don't worry about the scar immediately post surgery, as they do fade an awful lot - I know some people use bio-oil to reduce the visibility too. There will be some restrictions on physical activity while her sternum heals, but this shouldn't be a long term problem.

More generally, do share this with supportive friends or relatives as soon as you feel comfortable. It is a stressful time, and having trusted support is invaluable. Speak to other parents on the ward - they're all going through something similar. Be prepared that surgery day will be unpleasant; everyone advises that you leave the hospital as time drags ever so slightly less than if you're sitting with nothing to look at or to do. We spent the day of our son's surgery wandering round Leicester city centre in a bit of a daze, but it would have been even worse sat in the hospital.

In terms of specifics, try to speak to the cardiac liaison nurses at the hospital (which centre will you be at?). They're brilliant at explaining things in terms that are easy to understand, without over-simplifying things. And I can recommend the charity Tiny Tickers www.tinytickers.org/. While a lot of the information refers to babies, much is relevant across the ages.

I could write for pages an pages, but that covers the main things that spring to min right away, but please do feel free to ask anything else.

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specialsauce · 08/02/2022 23:01

My boy had open heart surgery for a large VSD at 5 months. The scar is minimal, they glue it - no stitches. Recovery was quick and although the first 2/3 days he was quite dosed up and out of it, when he came round properly he was happier and feistier than he'd ever been before. His apetite normalise, he could breathe properly, he was home within a week and on meds for 3/4 weeks then all finished. He's 12 now and strong healthy - never any problems since. Probably best not to say to much to your 6 yr old - just say the doctors are going to make some repairs and she'll be right as rain. If you're at the Evelina they are amazing! 'Echo' for parents can give you lots of support

Sandradale330 · 09/02/2022 16:57

Guys... thank you so so much. No words. Just thanks for the kindness in replying. Knowing and hearing your stories makes the world of difference.

OP posts:
WhenZoomWasJustAnIceLolly · 09/02/2022 17:27

My dd10 and dd7 both have a vsd but haven’t needed surgery even though it hasn’t closed. They both know they have a hole in their heart though. What have you said to your dd about her echo appointments etc? Doesn’t she know she has a cardiac appointment and hear the conversation then? That might be a starting point.

I have told mine that when they were growing in my tummy part of their heart didn’t close properly and left a little gap, so they have checks to see that their heart is strong and healthy. They understand that some children need surgery to close the gap.

If this happened to either of mine I would tell them that the little hole in their heart needed help to close and that they will be given some sleepy medicine so they sleep while that happens. Then answer their questions honestly and age appropriately. There are probably books for children that tell them what to expect etc.

I understand how frightening it just be for you and that it’s hard with an older child who may be frightened. Trying to be factual and reassuring is all you can do.

Ask her to tell you what she understands so you can then correct any misconceptions if she has any.

Have you found the heart line forums? You are likely to find parents there who have been through similar.

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