Definite Heart Problem at 32 Week Scan!!!

Okay so I will annoying and confusing and start a new thread so I can update everyone . . . .

I already posted this on my other one but here it is again

Just to let you guys know we had the echo and it wasn't the best news, there are a few things wrong and he will def have to have surgery straight away, if not a few. The doctors don't really know how he will do or what will need to be done until after he's born, they just know that it's not going to be that easy or straightforward. But of course we are all positive about it all!!

So yea, lots to take in, but we are doing okay so far.

I am a tad sick of people telling me not to worry, when I think I am allowed to Fine to say try not to worry too much, thats fine. But a few people have said don't worry its totally fine, he will be in and out of hospital in a few days. But we already know it's not simple and it will be complicated, so yea, that's one weird thing that has bugged me in the last few days!!!

Anyone else had to go through something like this personally??
I have stories of my 'brothers freind and my 'neighbours teacher' etc having kids with problems and them being fine coming out my ears!!! So I would like to hear from people that might have been through it themselves or someone really close iykwim?

He has Pulmonary Atresia and Tricuspid Regurgitation and honestly a few other things that are just as bad, but I don't really know the names or anything. There's thickened valves somewhere, leaky this and that and something else is shut that shouldn't be It's all complicated so I don't blame them for not knowing what will happen!!!

We are going in again on Thursday because a few other people want to look so we will have a massively better picture of everything then.

But yea, I thought I would let everyone know!!

We changed the baby shower next week to a 'good luck Ash party'

Edited by Katier

Thanks! I will give one to Ash too .

It seems like so many people are going to be thinking of him and sending good vibes in the next few months, surely that will help!! hehe.

No advice here, but just to stay you have every right to worry, you wouldn't be a good mummy if you didn't! I'll be keeping my fingers crossed for you and wee Ash anyway, its just great that they kind of know what they're dealing with so they're good to go when he gets out.

Love the idea of the good luck Ash party!

As for people on here, I think holz (she had twins) has a girl with heart problems but don't know if she posts much, plus I think (?) that Janine (mum2paris) has one of her girls with a heart condition. Sorry pretty vague!

Huge hugs! I dont have any personal experience but one of my good friends has a wee boy who has a serious heart condition and has had to have quite a few ops since he was born. He is a lot smaller than average and things have been very challenging for them but she has found good support from the Heart Kids support group (I think its something like that anyway). Maybe you could get in touch with your local group before baby is here so you have some idea of what you are in for. Good luck

No advice from me either, just wanted to give you a hug. Nikki from June mummies (june 07) had a heart baby, I will mention this thread in there for you as she doesn't come on here much but you might want to pm her as well. He had some surgery but I don't know exactly what it was for.

Big to you and your family.

No words of advice here - you sound like its coming out of your ears.

We will just give you lots of positive good luck vibes instead. Keep us posted and hang in there.

xoxoxoxox to you

A lady on The Nappy Network had a little girl born with heart probs and had surgery fairly early on. I could get her contact details if you like? I'm sure she'd be more than happy to talk you through it.

She had a pretty traumatic time as far as logistics go... had to travel from Dunedin to Auckland(?) to give birth and I think that meant she was away from her other little one. Don't quote me on that though.

I have nothing to add but just give you and Ash big

I think ppl tell you not to worry because they dont know what else to say? and I know that as a MUM we worry over every little thing so it our right to worry!

All I can say is that try and keep as positive as you can because I am sure Ash will feel it too....and when he is here and has to have his ops...atleast he will have loving mum who is there for him to cuddle, kiss and just say I love you!!

I will pray that what ever happens he will pull thru and be a strong and lovely little boy! Love hun!

Hi - Nikki here - the june mum with the heart bub.

I have to say that you have every right to worry all you like, and ignore peoples comments, you will get alot more unhelpful ones along the way ... everyone knows someone who had a minor heart defect, but it really is alot harder when bub has a major problem!
Jake had a large VSD, faulty tricuspid valve (regurgitation etc) and a minor hole, plus one side of his heart enlarged due to the other problems. It was absolute hell for me, I have to say ... it will probably be the hardest thing you will ever go through .... but at least you know now (and the docs do too) so you can prepare yourself mentally. We found out when he was 3.5 weeks, and I grieved for my "perfect" baby i'd lost. He had surgery at 6 weeks (after a long, losing battle in hospital to put on weight) and at 7 weeks was still only 10g above his birth weight. From then on things improved, and we're lucky he hasn't needed further surgery. He was little to begin with, but he is bang on average size now and has been for the last few months. I'm small, so he was never going to be huge anyway.

Now you would ahve no idea without being told - unless you pulled up his shirt and saw the scar. He is a very active toddler, and it has not slowed him down at all despite what I was told (he slept through at 12 weeks, rolled at 12 weeks, sat unassisted at 5.5months, crawled at 7 months and walked just after his b'day).

So it will probably be OK. I can't say it will for sure, but you will get through it and come out the other side stronger. I really really wish you all the best for the rest of your pregnancy .... and eat HEAPS to fatten him up ... it REALLY will help when he is born!!!!!! (trust me).

PM if you'd like to talk ... I'm having probs getting in at home since the maintenance, so it may take me a few days to get back to you.
Take Care.

You're welcome. I cried while writing it too!
Let me know if you have any questions. I know ward 23b inside out! The staff are awesome, and the 2 pead cardio surgeons we have in NZ are great, so he will be in good hands

Jake also tried to come out early - 32 weeks - which would have been a disaster given the circumstances, but we didn't know about his heart condition at that stage. I sat on the couch and ate like crazy for 2 months after that (on bedrest to keep him in as long as possible), as I'd been told I would never make it to term after going into labour early. I'm SOOOO glad I did now, as one of the worst things about his condition was not being able to grow, and the smaller they are, the more riskier the surgery.

Take Care. xx