heart murmur

dave1982

OK recently found out our 6 year old daughter has heart murmur.Which need's open heart surgery in Crumlin i think.No date has been as the Doctor said a funding issue means no ICU beds.It's a subaortic valve type not exactly sure of the correct name just basically a layer of tissue under a valve causing thining of a valve.Back in 2003 when she was born doctor's noticed murmur and said nothing to worry about it's innocent.Our GP then in 2005 was doing a health check on her and heard the murmur and advised my wife to get a echo done so we did and after doing the echo the specailst said every thing is fine it's innocent.Now our doctor took his word that it was fine.But this year my wife was not happy with our daughter because if you listen to her heart with your ear to her chest there's a swooshing noise consulted with our GP again he arranged the echo to be redone this time they found the problem.Which now needs open heart surgery.As you can imagine this is devasting news.But we have heard nothing but good things about the Crumlin.Just wondering is there any other parents out there that had to go through was we are about.
Any advise etc we would e gratefull
Hope this is in right forum:(

Dublin_Gunner

While I havent been through anything like this, and wouldn't wish it on anyone, all I can say is the childrens hospitals are fantastic, and I hope everything goes well.

It is devastating news to hear anything is seriously wrong with your little ones, but keep faith in the knowledge that the surgeons that perform these procedures are amazing at what they do, and they will have her fixed up in no time.

My thoughts are with you

kelle

My son's best friend was born with veins and arteries reversed (how can nature be so cruel:() and had to have open heart surgery at 11 days old in Crumlin Children's hospital.

It was a success- he is now 9yo, tall for his age and one big bundle of energy!

His parents have nothing but praise on the hospital, the staff are all lovely and friendly - just what you need when you are so vulnerable!

Have you been given a date for your daughter's surgery? I can feel your pain as my daughter was born with a Cleft Palate and I was told she needed an operation at 9 months old, when she was 4 days old! I spent every single day worried sick about that date. But all went fine, and it was more like enjoying her arrival (like I should have been when she was born) when she came home from hospital.

I hope all goes well for your dear daughter.

deisemum

I hope all goes well for your little one.

It's a big worry when children are sick especially if it's something that's worse than a child's typical run of the mill illnesses.

I've got a mummur, was told it was innocent, the only thing I have to do is take antibiotic cover when I have dental treatment.

ffocused

My son had heart surgery last June in Crumlin when he had just turned 1, he is fine now after his stay and the first rate care he recieved while in there. He was supposed to have it at 9 months, but again we had to wait until a bed was available.
The ICU beds are what keep patients waiting for operations and they are allocated on who needs them the most at the time. They never give a date for surgery as how anyone reacts after surgery is unpredictable. One child could leave ICU a week after surgery, while another child could take a month. (My son was 2 weeks in ICU)
We got a phone call 1 week beforehand to come in for the surgery.
Once you have been seen by a cardiologist you are on the radar, and will get the call, but you have to realise that there are other children far worse off then your daughter. It is a hard thing to accept, but when we were in Crumlin, we seen children far worse off then our son. If you want more info you can pm me. I can send you a dvd of baby on board which we were on, leading up to the surgery if you think it may help you.

dave1982

Thank's for replie's guys and your support.Yeah there are kid's a whloe lot worse off than she is but still frighting.We have been seen by a cardiologist a Doctor Franklin very nice woman.We just finding the waiting tough while our daughter is clueless to the situation perfectly healthy on outside no-one ever know's what's going on in the inside.Is that DVD a documenrty?Again thanks guy's

ffocused

yes, it is a documentary, here is a link to the episode summary

http://www.rte.ie/tv/babyonboard/s2_episode5.html