Parents of VSD little ones

[FlowerofLondon]

Not sure if there’s any parents out there of little ones with a hole in their heart? I’m a single parent and my twin daughter who’s almost 5 months old (4 corrected) is due to have her heart surgery in 3 weeks and it’s starting to hit home

I’ve tried to be good with writing down questions I want answering - to ask the consultant when I see them but keep wondering if I’m missing anything

Got my pre op appointment with surgeons soon and wondering if anyone can give me any pointers as to what I should be asking (other than the obvious Q’s about the surgery)

I’m also unsure as to what I need to take in for her - as guess clothes will not be necessary??? Any pointers for this or anything else I would be really grateful for.

[10gingercats]

I was born with a congenital hole in the heart and later also it was discovered I had a faulty tricuspid valve. ...probable present since birth .I am now 83. My hole in the heart was only closed 10 years ago and the tricuspid valve deteriorated in recent years . Nobody spotted this until recently . Thankfully it did not affect my life and i got through a pregnancy with few problems .Lucky your daughter will get her hole in her heart closed now and then hopefully she will have a long and happy life with no heart problems.

[DanniC88]

Hi there, first off I hope your well. My little one had an op 3 months ago but it wasn't heart related. Still its hard to go through. I felt quite upset on the day because it was the feeling of being helpless. Im sat next to an empty bed on the ward while my son was under and being operated on. I walked down to the concourse of the ward and grabbed a coffee and some fresh air. Just to pass the time really. Hospitals are good at reassuring parents. There were plenty of people I could talk to which helped. Because of covid there wasn't many to a ward so I got chatting to another parent who's baby was in for a similar surgery. It helped ease worries when talking to another. As for what to take I took lots of onsies. Because my son's surgery was through his abdomen it allowed for ease of access. Also took little socks, his own blanket, books and 1 or 2 simple toys to distract him. I also took overnight clothes for myself and something to eat.

Its hard I know. The hardest part for me was holding him in my arms while they put a mask on him to put him under. He had tears in his eyes and said mumma mumma. Well that was me an emotional wreck being escorted to the lift back down to the ward. But I realised he needed this surgery at that time. Mothers love to you hun. Be strong! You got this! Xx

[Bpw92]

hi, how did the surgery go? my 4 week old has just been diagnosed with large VSD. I’m absolutely terrified and just trying to prepare ourselves for surgery as it’s very unlikely to close on its own.