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Original poster

My 5 year old daughter gets heart surgery next week

62 replies

jasper · 16/01/2006 00:28

My little girl was born with 2 holes in her heart between her atria.
They won't resolve with age and yesterday we received a letter to say the corrective surgery is scheduled for this Wednesday.

It is done under general anaesthetic and she will be in hospital for three days if it all goes to plan.
A catheter is inserted through a leg vein with a little device which will close off the holes. If it is not a success she will have open heart surgery later this year.
Have any of you had experience of this procedure?
Thanks.

OP posts:
mears · 16/01/2006 00:40

No experience but am sure someone will come along in the daytime. Although it sounds alarming it probably comes under the term of 'routine' in the specialist unit. Hope all goes smoothly.

mears · 16/01/2006 00:42

ps can't believe she is 5 already

geekgrrl · 16/01/2006 07:03

wow jasper, is this the amplatzer or cardioseal?
My dd had her VSD & PDA done as open heart (she wasn't a candidate for non-OH repair), so I have no experience of catheter repairs. But am keeping fingers crossed for your little one.

Original poster
jasper · 16/01/2006 08:25

geekgrrl you know more about this than I do!
I don't know the name of the technique. A catheter goes up a leg vein and a thing like a tiny umbrella is pushed into the hole and inflated to seal it.

How old was your daughteer when she had the surgery and did she make a good recovery?

OP posts:
Potty1 · 16/01/2006 08:51

Hi Jasper.

My dd has had open heart and several catheters ( only the diagnostic type not a repair although the basic principle is the same). Will be thinking of you on Wednesday. I hope that they can fix her in this way and you manage to avoid OH. They usually have quite a bit of bruising in the groin area and plus the after effects of anaesthetic but she'll surprise you with how fast she bounces back.

Not sure if they usually go to ITU after this type of repair but if that's the plan - have a look around first. Where is she having surgery?

fairyjay · 16/01/2006 08:58

Thinking about you.

Heartmum2Jamie · 16/01/2006 09:16

I will be thinking of you as well and hope that all goes well so your dd can avoid OHS. My ds has not had a catheter, idagnostic or otherwise so I can't give personal experience, but those that I did see on the ward who had repair this way seems to bounce straight back. I hope that this is the case for you.

Hulababy · 16/01/2006 09:18

I hope all goes smoothly.

kreamkrackers · 16/01/2006 09:24

my dd is 20 months and has had 2 bypass operations on her complex cardiac condition (can't describe properly what it involved as it was a new operation and i can only understand it in my head, can't explain it to anyone else! the cardiac liason nurse described it to dp as a total reconstruction of the heart.). she also has many cardiac catheater proceedures done. the problem she always gets is that she loses her foot pulses so we know we're going to be in for a week instead of three days. anaesthetic always makes dd very sickly and sleepy for a couple of weeks after having it. these days catheater proceedures manage to close holes very well, hopefully this will be the case for you. please let us know the outcome.

Dinosaur · 16/01/2006 09:30

Hi jasper,

No experience but just wanted to wish you all the best.

DS2 had minor op (part of clubfoot correction) when he was a baby so I did have the experience of seeing him being put under general anaesthetic. I was on my own with him and found walking away and leaving him on the trolley very hard, so I recommend that if at all possible you have another adult with you for support. He was a bit distraught when I went to collect him from theatre but did cheer up pretty quickly and was playing in the children's play area by teatime that evening.

Wishing you and your dd all the very best.

macwoozy · 16/01/2006 09:35

Thinking of you on Wednesday, hope all goes well.

Elibean · 16/01/2006 09:51

Hi Jasper,

No personal experience, but a close friend of mine's dd had this done recently (in Germany) and it was a great success. Just wanted to wish you and your DD all the best, may it go as well.

xx

winnie · 16/01/2006 10:06

Jasper, no advice I am afraid just wanted to wish you all well, Winnie

SnowmAngeliz · 16/01/2006 10:08

Hi Jasper, no advice but hoping all goes well
+

Lonelymum · 16/01/2006 10:10

No experience of this but my dad used to do this kind of procedure every single week for years and years. I am sure your little girl will be in safe hands. My ds1 has had three general anaesthetics though for less serious surgery so I know what it feels like. I wish you all the best, but remember what I said about the safe hands part: they really do take very good care of your little ones when they are in hospital.

coppertop · 16/01/2006 10:13

No experience but just wanted to wish you all the best of luck.

Wallace · 16/01/2006 10:21

I agree with dinosaur that it is very hard leaving them and walking away. Dd was very sedated when I took her into the anaesthetic room (they only let one parent in) and I found it so hard I ran out before I had to go

Dd had a diagnostic catheter under general anaesthetic when she was a baby, and she went to the High Dependency Unit afterwards. She had open heart at 18 months. She had a hole between the ventricles, and even though her op was open heart it was regarded as routine, straightforward and not much to worry about (well the doctors felt that way - we were terrified!) She recovered very quickly and was running around three days after surgery!

I hope your dd's surgery is succesful, and willl be thinking of you xxxxxxx

RTKangaMummy · 16/01/2006 11:27

I don't have any experience but wanted to send you and your little girl some cyber hugs {{{{{{}}}}} and some positive mumsnet vibes ++++++++++ and that I will be thinking of you all on Wednesday

chocolateshoes · 16/01/2006 13:32

No experience to share but wanted to wish you lots and lots of luck on Wed & hope it goes smoothly.

CountessDracula · 16/01/2006 13:50

jasper, my father had a quadruple bypass a few years ago. I really can't share anything of use with you other than to say it is very frightening while it is happening but he is so much better now that it is worht the angst at the time.

I can't imagine how you must be feeling though. Will be thinking of you on Wednesday

doormat · 16/01/2006 13:52

jasper thinking of you and your dd
hope all goes smoothly
xxx

cupcakes · 16/01/2006 14:00

Good luck for Wednesday. Will be thinking of you and your dd.

PrettyCandles · 16/01/2006 14:03

Hope it goes well for your dd. I hope you'll have someone with you while you wait for the op to be over.

{{Hugs}}

Piffle · 16/01/2006 14:14

jasper, not had it done to dd as her defect is not needing surgery
BUt I know literally hundreds of children with dd's syndrome that have had balloon valvoplasty and hole corrections, I know 2 children under 3 who went on to have open heart surgery after that and all of the children are fine now - like said below a little groin bruising esp in younger kiddies, but they usually recover astonishingly quickly.
It is desperately worrying when its your baby and your little girls heart, but to cardiac surgeons it is considered a relatively straightforward procedure with excellent results
Good luck for Weds will be thinking of you
Where is your dd having it done?

Enid · 16/01/2006 14:15

sorry to hear this jasper

will check on here to see how everything goes