Definite Heart Problem at 32 Week Scan!!!
Printed From: OHbaby!
Category: Pregnant
Forum Name: Pregnancy
Forum Description: Pregnant! Wanting to chat to other mums-to-be (or dads-to-be)? Share your thoughts, experiences, and ideas... This is that place!
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20271
Printed Date: 22 August 2025 at 6:26am
Software Version: Web Wiz Forums 11.10 - http://www.webwizforums.com
Topic: Definite Heart Problem at 32 Week Scan!!!
Posted By: Katie_R
Subject: Definite Heart Problem at 32 Week Scan!!!
Date Posted: 21 August 2008 at 3:03pm
|
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'   ------------- 
|
Replies:
Posted By: surfergirl
Date Posted: 21 August 2008 at 3:07pm
No real comment, just a hug  and permission to worry...it's not fair people tell you not to! ------------- http://www.alterna-tickers.com"> 
|
Posted By: Katie_R
Date Posted: 21 August 2008 at 3:10pm
|
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. -------------
|
Posted By: james
Date Posted: 21 August 2008 at 3:35pm
|
aww hun lots of hugs here too ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: emz
Date Posted: 21 August 2008 at 3:50pm
|
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! |
Posted By: susieq
Date Posted: 21 August 2008 at 3:54pm
| Bug hugs |
Posted By: aimeejoy
Date Posted: 21 August 2008 at 4:07pm
|
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 ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: minik8e
Date Posted: 21 August 2008 at 4:21pm
| Yep, holz posts as tashsmum or tashzmum though I think. She had twins in April, one had pretty big heart probs and had surgery within a few days of being born, and then another 2 in the next few days after that, and is nearly at her next one. You could try PM her? Caroline is now 4 months old and a happy little sausage, even though she has some probs - but she also has some non-heart related probs as well which contribute to that. |
Posted By: cuppatea
Date Posted: 21 August 2008 at 8:00pm
|
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. ------------- 
 
|
Posted By: caraMel
Date Posted: 21 August 2008 at 8:16pm
|
from me too!
/thinking of you guys and your precious wee man and sending you lots of prayers. ------------- Mel, Mummy to E: 6, B: 4 and: 
|
Posted By: cat007
Date Posted: 21 August 2008 at 10:17pm
|
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. ------------- http://lilypie.com">  [/url http://lilypie.com">
|
Posted By: Anna
Date Posted: 22 August 2008 at 8:21am
|
Oh Katier that is some daunting news. You are right to worry but at least you know what you are up against and I am sure there will be some pretty fantastic people looking after you and your wee one.
I hope that you are doing ok and looking after yourself and that little boy of yours. Big hugs! ------------- Anna http://lilypie.com"> 
http://lilypie.com"> 
|
Posted By: nikkitheknitter
Date Posted: 22 August 2008 at 9:25am
|
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. |
Posted By: Katie_R
Date Posted: 22 August 2008 at 11:08am
THANK YOU SO MUCH for all your kind words and wishes~! 
I would love that email Niki if you come across it in the next lil while, and I will (over the next few weeks) maybe get in contact with the other people mentioned, unless they come on here first
We got a call yesterday and after they all reviewed the case they have a few other people that want to take a look and have some other study/scan things they want to do. AND they want to see us sooner than they first thought, so next Thursday I can give you guys another better informed update!! Thanks again for all your positive thoughts!!!!! x Katie -------------
|
Posted By: Roksana
Date Posted: 22 August 2008 at 11:13am
|
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!  ------------- http://lilypie.com"> 
http://lilypie.com"> 
|
Posted By: My3Sons
Date Posted: 22 August 2008 at 11:15am
|
Katie I dont have anything useful to add but I just wanted to say I think you have a fantastic attitude and I wish you all the best for the rest of your pregnancy and wee Ashs arrival! ------------- Mum to Mr 10, Mr 6 and Mr 4
 
|
Posted By: Nikki
Date Posted: 22 August 2008 at 1:28pm
|
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. ------------- DS (5yrs) and DD (3yrs) |
Posted By: Katie_R
Date Posted: 22 August 2008 at 2:19pm
|
Thank you so much for posting Nikki You got me all emotional! But in a good/sad way.haha.
Your lil boy sounds really similar to Ash (and thanks KiwiMummy we have decided it's the best name ever too hehe. Followed closely by his big bro Kaspars (9) name  ) similiar as far as EVERY kid seems to have completely different problems as far as I can tell!!
But thank you so much for sharing your story, I will completely pm you at some stage. . . My dh read it also, and insisted he made me a whole second lunch.lol. You are right, we have to remember to send him 'get big and fat and healthy while he can' vibes too.hehe. We actually spent last night in hospital as my mw was concerned (more than I was) that my waters were leaking. BUT it was all fine in the end. I guess this is welcome to high risk pregnancy Katie time!! Last thing we want is for him to come out early and be a teeny as well. eeep
Thanks again, and I am so glad that you all came through the other end of the madness. I can't say I know what it feels like (yet) but I am starting to get a fairly good picture, thanks to you people like you and everyone else that are there for us! xxx Take care and thanks everyone! Will def keep everyone updated -------------
|
Posted By: Nikki
Date Posted: 22 August 2008 at 2:31pm
|
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 ------------- DS (5yrs) and DD (3yrs) |
Posted By: Nikki
Date Posted: 22 August 2008 at 2:32pm
|
PS - Shame I had 10kgs to lose after I had him tho! hehe. ------------- DS (5yrs) and DD (3yrs) |
Posted By: Natalie_G
Date Posted: 22 August 2008 at 3:31pm
|
Sorry to hear about all this Katier.
You are allowed to worry about your little bub, its a parents instincts to worry. Glad to hear that bubs is staying put for now and not coming early. Big and take care of yourself.------------- http://lilypie.com">  
|
Posted By: caitlynsmygirl
Date Posted: 22 August 2008 at 11:27pm
|
I dont have any advice or anything Katie, just wanted to offer my support and love too, and lots of love to Ash
Im so sorry you have to go thru this, as for being told not to worry , ah ignore them chick , its your right to worry , it would be a bit worrying if you didnt worry imo! |
Posted By: WestiesGirl
Date Posted: 22 August 2008 at 11:53pm
|
No advice hun just wanted to say that Im sorry you have to go through this and give you big . ------------- Our Angel July 08  Gone but not forgotten
And to complete our family, our princess has arrived 
|
Posted By: MonicaMouse
Date Posted: 25 August 2008 at 11:46am
|
Nothing to say, just wanted you to have that. ------------- 
Blair 15/10/2007 Daniel 30/07/2009 |
Posted By: Katie_R
Date Posted: 03 September 2008 at 9:35am
|
Hey guys,
I thought I would give you a bit of an update and let you all know that I am still around and surviving! . . just
We had our echo and meeting last week and they pretty much didn't tell us very much more, just that there are a few different things and they still don't know how it will all go until after Ash arrives. We did get to take a look around the cardio ward, which was good to see but really did make it all seem a lot more real so I was in a 'not so happy' mood for the rest of the day! It will all be really hard, but still doable and everyone is right we will get through it in the end, it will just be tough! Also our lil boy will be getting the best attention and care that is possible
The doctor said that at the minimum we are looking at 2 weeks hospital stay, but given the 'other' little problems with his heart it will most likely be longer. In two weeks I will be able to see where I am going to deliver and also meet one of the mw, I won't know who will look after me until I am admitted. But I have lots of questions about monitoring during labour (uuuggghh) that will settle my mind I am sure. Anyway, thanks again for all your positive thoughts and comments. . . . . I will keep you updated!!! x K -------------
|