Large VSD surgery. What can I expect?

[junebuglb]

Hi, I don’t know where to start really but my daughter was born early and small and has had quite a few health issues, one of which was a heart murmur. On Friday it was confirmed to be a large VSD and also PFO. We have been told she is very likely to need surgery to repair it when she’s around 6 months old unless any problems arise that would mean she needs it sooner (she’s currently 9 weeks old)

I guess I am just trying to work out what to expect. I’m so sad for her and worried about the surgery; recovery, and waiting and watching for symptoms in the meantime. I’m second guessing myself every time she is breathing quickly or spitting up after a feed.

Has anyone experienced this surgery with their child and can help us know what to expect? We spent a month in NICU with her and I’m so daunted about seeing her much older with wires, tubes back in etc.

Thank you

My daughter was born six weeks early and whilst in NICU, they discovered a large VSD when she was a week old. Within a week of diagnosis, she had a PA banding operation, which was a temporary fix until she was big and strong enough for a full VSD repair.

The VSD repair operation took place just before she turned two. They had intended to put her on a trial discharge pathway that would have seen her home by day 7, post-op, however her operation came with some unforseen complications. She ended up staying in PICU for nearly three weeks and then a further week on High Dependency Unit and the ward before being discharged home. In total, we were in hospital for about a month. From what I understand, most patients who have a straightforward surgery get home much quicker than we did. During her time in PICU, she was intubated for quite a few days before moving CPAP and then high flow oxygen support. She had numerous monitoring wires, as well two or three draining tubes around her lower chest. She had an NG tube for about two weeks before being strong enough to eat again.

It was a tough few months post operation, a lot of daily medications and it took some time for her to start putting weight on but she's six now and you'd never know what she went through just by looking at her. She's doing great in school and keeps up with her peers, physically and mentally. She still bears the physical scars from the incision and the draining tubes, she has questioned them from time to time but they don't cause her any upset currently although I expect this may change as she gets older.

I know it's easier said than done but try and stay positive. It's a big surgery for such little ones but it has really good success rates and is the bread and butter of paediatric cardiac surgeons. I'm sure she'll be in great hands.

If you have any questions, feel free to ask away. I used to be a member of some large VSD support groups on Facebook which I also found helpful at times to gauge other people's experiences.