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Original poster

anyone have experience of hole in the heart surgery on babies please?

14 replies

princessLUCYKATE · 28/07/2007 20:41

friends of ours are having a rough time. their baby is about 4 months old and having surgery on wednesday. the hospital they are going to is near my mum so we may take a trip up, get mum to look after our dc's and go and visit them, is there anything we can do/say, help support them?

although i was born with a slight heart defect myself, i have no experience of things to the degree they are facing.

OP posts:
saggarmakersbottomknocker · 28/07/2007 21:30

Princess - hi - my dd has had heart surgery, not for a hole though. I think the best thing you can do is be there for them. It's a difficult time. Do they have other children? Help with them is always welcome, and take them some 'comfort' things. Snacks and drinks because you often don't feed yourself properly when in hospital. Offer to sit by the cot whilst they go and have a proper meal (if you're happy to do that). I hated leaving dd alone even though the staff were very attentive.

I post on the message board at Heartline. Pass on the details to your friend - they are a very supportive group.

Original poster
princessLUCYKATE · 28/07/2007 21:41

thanks for your reply, yes they do have another, they are actually twins, a boy and a girl. its the girl who's poorly.

the heartline link is really helpful, will pass that on

OP posts:
saggarmakersbottomknocker · 28/07/2007 21:51

Oh twins - that must be lovely, and difficult too. They are quite a few multiples on Heartline.

I hope everything is straightforward. It's surprising how quickly the babies bounce back. It's us mums (and dads) that struggle.

Heartmum2Jamie · 28/07/2007 21:54

I also have a son who has had heart surgery and can only nod in agreement at all that Saggar has said. All gifts of food and drinks are very welcome and offers to help out or entertain the other child/ren are very much welcome. Even offering to sit at the child's bedside so they can get a meal or a shower, or even some sleep is also welcome sometimes (although like Saggar, I HATED leaving my ds). Some practical things like getting some magazines or stuff to read, is good. Really, just be there for them, a friendly ear and a shoulder to cry on is often all we want. Wishing the best of luck to your friend next week

saggarmakersbottomknocker · 28/07/2007 21:56

Hello Hm2J

Heartmum2Jamie · 28/07/2007 21:59

Hey Saggar Fancy meeting you here, lol!

You alright hon? How's dd? Should spend more time on HL really and catch up properly.

saggarmakersbottomknocker · 28/07/2007 22:03

Sorry for hijack LucyKate.

Yes we should catch up properly lol. dd OK, still not 'right' but you know how it is. She's off to PGL on Friday we're staying over in Lyme Regis for the week as it's a bit of a trek just to drop her and then go back to pick up. Hope all is OK with you and yours.

blueshoes · 28/07/2007 22:54

Hi princess, you are a lovely friend. My dd had open heart surgery to repaid a hole (VSD) at 4 months' old as well. It went really well. She was out of hospital in 6 days. We have never looked back since.

It is safe to say that the worrying and stress is worst just before the surgery. The hardest thing they have to do is hand their dd to the anesthetist. After that, their dd will be in the best of hands. And she will bounce back so quickly like they would never believe it. hth

Children are amazing. I don't believe my dd felt any pain, really, I was watching her carefully. I did not even have to handle her gingerly after the surgery. The babes are very well sedated and kept comfortable whilst healing.

blueshoes · 28/07/2007 22:59

One thing I found very helpful was to have my MIL come with dh and I to the hospital before the surgery. I believe all surgeries are scheduled for the morning and there is a queue.

The doctors will want the baby to be starved just before the surgery - 6 hrs for ffed and 4 hrs for bfed. I knew my dd would just cry and cry. And because she was bf, I did not want to carry her because she would smell the milk and cry even more. So MIL held and cradled her. And my dd fell asleep through the worst, particularly as surgery was delayed by earlier one taking longer than anticipated.

I wonder whether your friend would appreciate the support whilst her dd was being starved in prep.

lucykate · 28/07/2007 23:17

have dropped the princess name now : )

blueshoes, they have been having trouble feeding her from birth which is how the holes in her heart were discovered. she has a feeding tube atm, and is on little but often but throws alot of it up. i don't get the impression she has grown much since birth, she gets distressed and cries a lot and pulls the tube out

i really feel for them over the anesthetic, i've been told the 'flop' that happens when they go under can be quite distressing for the parents.

blueshoes · 29/07/2007 09:43

hello lucy, yes, the "flop". I never actually saw it. My dh and I walked down to the operating theatre with dd. Dh carried her because I could not bear to. Then when we got in, the room was full of theatre staff all scrubbed up and prepped. Dh handed her to the anesthetist. Dd's eyes looked around in surprise, as she would, at leaving her daddy's arms. Then started to cry and flail as she was lowered onto the table.

We were quickly ushered out to cheery noises of support and reassurance from the staff. I think they almost forgot about us and only just remembered to say goodbye to us. Then the swing doors closed behind us, with dd blocked from our view by people hovering over her.

It was a 4+ hour wait. We were advised to go outside and have a coffee - that was a bit surreal but the right thing. We were paged once the surgery was over.

Hole repair is very very routine and incredibly easy to fix. I know your friends will still be mulling over the risks in their mind, it is never easy. But as their dd is having difficulties feeding, they will be stunned at the difference once the hole is fixed. It is right to go in now and fix it asap. hth

Heartmum2Jamie · 29/07/2007 12:55

Ah, the "flop". It is awful, it is the only time I completely broke down. Both dh & I went to the anaesthetic room. I was sat with ds on my lap (he was 9 months). The staff were all really great, demonstrated on teddy and then put a mask over his mouth/nose. Ds screamed and screamed and then just stopped and wwent completely limp. The team took over then, placed him on the bed and alowed us to say our goodbye's. Thankfully a nurse from the ward was waiting for us with a box of tissues, I think almost all parents come out crying. I agree that the flop and the waiting are the hardest parts. They should definately try and leave the hospital, get something to eat or drnk, they will need to keep their strength up. Also the PICU staff will actively encourage them to get some sleep while the child is in their care and I really recommend it because once they are back on the ward, sleep is difficult!

lucykate · 29/07/2007 13:10

thanks for all the replies. the op is wednesday, so the plan is to go to my mums on friday, see them on saturday or sunday. they are sounding quite philosophical about it all, trying to focus on the fact that she will be so much better/comfortable afterwards, rather that dwell on the surgery itself

blueshoes · 29/07/2007 20:56

That's nice of you, lucy. Hope it all goes well for your friend and her dd - I am sure it will

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