Vsd and tof surgery

[karoo71111]

Hi! My son is 11 months old and is due to go to Leeds on Sunday for open heart surgery on the Monday morning he has a large vsd what was diagnosed at 6 weeks old after hearing a heart murmur he had scans and also found he has teralogy of fallot. I'm absolutely crapping myself about his surgery its tearing me apart I just keep fearing the worst and I dont know what to do. I cant bare the thought of losing my precious little boy I honestly just feel like I'm going insane I'm having nightmares and all sorts it's on my mind 24/7. Has anyone had the same thing with there children and if so please let me know what to expect and what the outcome was xx

Understand where your coming from, my son isn’t vsd or tof but was born with half a developed heart (hypoplastic left heart syndrome). He had open heart surgery at 3 days old, 3 months old and a further cardiac catheter surgery at 7 months, he still needs atleast 1 more open heart surgery when he’s 3. Please try and remain calm and take each day as it comes, make sure and speak through your fears with the nurses on ward or in intensive care. The nurses are there to take care of parents also and no question or worry is stupid to ask.
Wishing you all the best, and just remember not 1 congenital heart defect is the same as another. X

Aww bless him so hes had 3 surgeries so far? That must be so traumatic for you all I am barely coping with my boy having to have this one nevermind more. Do you go to Leeds? Iv spoken to a councillor the liaison nurses I'm forever asking questions i just cry all the time he had his pre op last week and I just cried my way through most of that and it was only blood tests and chest xrays etc. My partner is really worried about me iv had to go on sick from work as I just cant bare been apart from him. Just looking at him sets me of I feel so low and down about it all it's hard as I'm also 5 months pregnant so my hormones are everywhere too. Xx

Oh bless you, please dont feel alone, there will be other parents you will meet on the ward and in icu. Cardiac liason nurses and other heart parents got me through hospital stays with my son.
I was slightly different as my son was diagnosed when I was 19 weeks pregnant and I was transported down to London from Scotland to give birth. All my sons heart surgeries have been done in the Evelina hospital London, we travel 9 hours by train everytime. He’s 20 months now and is doing very well considering all the surgeries, babies and young kids heal and bounce back much faster than adults.
Try not stress and keep the future in mind with your son and unborn child. Are you part of any Facebook heart parent groups? It may be good to search Facebook and find other parents who have been through this so you can see success stories xx

My son had OHS at 6 weeks to close a VSD, ASD and do some reconstruction work on a valve. He'll be in great hands, you will be too. I found the support we received as parents in the hospital (not UK, but I'm sure the UK will be similar) was amazing.

It doesn't make it any less scary, but you'll get through it and so will he. You'll be amazed at how quickly they bounce back! These are fairly routine ops these days.

Try not to get too stressed, he's in good hands.