Open heart surgery- tratology of fallot. Baby

[Mummy2be2babymurray1990]

My Daughter (10 weeks old) has been accepted and added onto the cardiac surgery waiting list for open heart surgery.

I'm just wondering if anyone could advise how long they roughly waited for surgery from finding out they had been added to the surgery waiting list.

Just so I can try and mentally prepare and also buy things we need such as side fastening vests.

If you are on Facebook there is a very supportive group called Patches.
A girl in my daughter's primary school class had same defect as your baby.

My daughter was diagnosed with heart defect at 15 so we are later to it all.

Two weeks for our son, it was delayed one extra day because the conduit was late coming from the Netherlands.

It will vary because of a variety of factors but I would assume and plan for sooner rather than later, better to have bags packed before you get the phone call.

She will likely have her a patch over the sternum when you see her after surgery and have her chest closed a few days afterwards. During this time she will be in just a nappy, so prepare for that, and she may well lose a bit of weight for a while, so I wouldn't opt for babygrows too big.

It tends to be quite warm on children's wards so keep that in mind.

Good luck and I'll keep my fingers crossed for you but remember that these types of cardiac surgeries have really excellent recovery stats.

Sending you love. My daughter had open heart surgery at 9 days for TGA.
Sorry I don’t have any experience with the waiting list, but really recommend tiny tickers - they were a massive support to us! Good luck and hope it all goes well
my little girl is 2 now and absolutely thriving x

I'm 32 and have TOF, and doing pretty well! Just came on to say good luck with surgery when she has it!

I think it depends on how serious the defects are and how the child presents clinically .My son was diagnosed with Teratology of Fallot just shy of a yr old. He had a VSD diagnosed at birth which we were reasonably relaxed about as often these heal up and our son was not clinically unwell .As time went on and more investigations we were told the news and he was put on the waiting list for surgery which he had eventually at 23 months .
He was still quite well in himself but he was having more cyanotic episodes. Some children need their surgery earlier.He had the surgery which was a horrible 8 odd hrs waiting was in Peadiatric ITU overnight but from then did really well and was discharged on Good Friday .They wanted to keep him over the BH but let him home as he did so well and I was an ITU nurse .He was on meds for a while but recovered really well.I think someone has already said the care was fantastic and he remained an outpatient until he was 18 when he was transferred to adult services .
I have since nursed other Fallots children both in hospital and community and they have all done well although they have to warn parents of the risks and this can be very scary to hear .
Hope this is helpful .

My son is now in his thirties and doing very well by the way .

You might find that giving these good people a call is beneficial.

https://www.youngatheart.org.uk/

My niece had this surgery and now is doing brilliantly. All the best to your daughter.