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congenital heart defect

(15 Posts)
peanuthead Wed 16-Sep-09 10:18:49

Not sure where to post this really....

I'm 15 weeks pg and last week the baby was diagnosed as having a single ventricle defect; it's too early to say how serious and what (although it's the left one that is small)

I just can't decide what to do - swing from thinking we'll cope with a sick child to wanting to terminate.

Just wondered whether there are any MNers out there who've experienced the same and what the outcome was etc.

I know there are various heart charities with forums but they're so unrelentingly positive and really I want more honest or realistic outlooks.

meltedmarsbars Wed 16-Sep-09 11:22:59

I'm sorry this is happening to you, and bumping for you.
Hopefully someone with more relevant experience can come along. I have a disabled child, but not with a heart problem.

meltedmarsbars Wed 16-Sep-09 13:05:29

You could try posting in Health?

memorylapse Wed 16-Sep-09 13:21:40

Im so sorry that youve had this news..however there are also lots of positive stories concerning children with heart defects.. who have you spoken to medically regarding the diagnosis?

peanuthead Wed 16-Sep-09 13:50:33

have posted in health but not a single reply! well the diagnosis isn't yet possible as it's too early - have a more definitive one in 3 weeks at 18 weeks. For now all we have to go on is that there is a significant malformation and that the left chamber is small. and that's it so far - from the fetal cardiologist.

cakeandwine Wed 16-Sep-09 15:19:21

Hi Peanuthead

Have a look at a website called heartline, where there is a forum esp for babies and children with CHD, including pregnant mothers.

My daughter was born with a VSD, it was eventually fixed via open heart surgery. She is a very happy, energetic 2 year old now and although very poorly as a baby and we had to go through a lot of stress, I don't regret going through all that for one tiny second.

I am sure it must be a shock, but there are lots of parents out there who will be able to advise you.

memorylapse Wed 16-Sep-09 15:30:11

Its a horrible situation for you to be in..as you must feel that you are in limbo..until you get a definate diagnosis...I think right now , you are'nt really in a position to think about what to do next until you get a definiate diagnosis..which is going to be stressful in the least while you wait..is there anyone you can talk to in the meantime..I think its one of those where they cant give you a prognosis, because they dont know themselves at the moment. It may not be as grim as it sounds,as surgery may well be able to correct the potential problem thats discovered

IIRC Ulrika Jonssons little girl was born with quite a serious heart defect which was picked up on scan, but I beleive that after several ops, shes living a happy, healthy lifesmile

massive (((hugs)) to you though..wish I could say something helpful

ra29needsabettername Wed 16-Sep-09 15:34:03

It really can be positive. DS is 12 and was born with the arteries the wrong way round. He has had 2 open heart ops and will need another and honestly going through that IS like hell on earth BUT I promise you would never know. He is a completeley normal stroppy gorgeous 12 yr old. I didnt find out until after he was born so didnt have the dilemmas youre facing. You must feel devastated. Having lived it though if now I had a baby with this diagnsed there is no way Id terminate (thats not said with judgement of others). You need to find out exactly what the diagnosis is. Many heart defects are not even that hard to treat (although some are and are chronic). I would reccomend heartline too. It's not like mumsnet (!) but you will get a wealth of information and probably find someone who has had a child with your baby's condition.
I am so sorry you are going through this but honestly it is possible to come out the other side.

PanicMode Wed 16-Sep-09 16:05:18

I have a hole in my heart and a VSD. I've never had any surgery, although it was discussed at one point. I played in the firsts for every team at school, and at county level for tennis for a year or so, rode horses through all of my childhood - in short never had to stop doing anything I wanted to do becasue of my heart ''problems''. I was monitored when I was about 13 as I had fainting and circulation problems which they thought may be connected, but turned out to be ''growing pains'' or something. So try not to worry (easy to say) until you have more information - it may not be as serious or debilitating as it first sounds.

Cyclista Wed 16-Sep-09 20:19:17

Hi

I've not posted before on Mumsnet and wasn't planning to (happy lurking) but I have to reply to this post.

I was born in 1975 with a heart condition - VSD with aortic incomptance. I think this means a hole in my heart and my aortic valve leaks - lets blood back into my heart after it's pushed it out etc. When I was 3, I had open heart surgery. The hole was successfully closed but my aortic valve still leaks to this day.

I believe I was poorly before the surgery - apparently I stopped breathing at 5 weeks and my Dad saved my life. I was also blue and a bit sickly. However all I can say now is that I'm ridiculously healthy and have been for most of my life. I've never let my heart stop me doing anything. I'm not superwoman by any means but I've run a marathon and numerous half marathons (I was a regular runner before I got pregnant). I cycle everywhere still (30 weeks) and last year took a month off to cycle 1200 miles across the Alps. I climbed Ben Nevis at 5 months pregnant. I dash about everywhere. I do everything non dodgy heart people do and they generally don't realise about my heart unless they see my scar. As I said, I'm pregnant now - my heart has coped incredibly well with being pregnant and at present, they don't think my baby's heart is likely to be wrong, although they won't know until he's born.

I can't promise you your child won't be poorly, I think I've been very blessed. But please don't despair. What I'm trying to say is that it's PERFECTLY possible to lead a PERFECTLY normal life with such a heart condition. I really feel for you - I can't wait to check my own son's heart is okay when he arrives - but this isn't the end of the world, I promise.

Hope this helps at all.
x

MamiBabi Wed 16-Sep-09 20:25:12

I was born with a hole in my heart - they deccided that it was serious enough to justify surgery when I was eight, the hole was closed and I went on to live an absolutely normal life (well, mostly!). I am the mother of a 20 month old and dc2 is due in 4 weeks so though I can'tpromise things will be fine, given that my surgery was performed 25 years ago and things have moved forward since then I wouldn't look at this as being the end of the world just yet.

Hope this helps.

saggarmakersbottomknocker Wed 16-Sep-09 22:16:36

peanuthead - I posted on your other thread.

I'll copy it here.

saggarmakersbottomknocker Wed 16-Sep-09 22:17:51

Hello Peanuthead.

Firstly - congratulations on your pregnancy.

My dd has a complex congenital heart defect - not single ventricle however and not diagnosed before birth. I do know a bit about hearts though.

Generally the surgeries offered to children with single ventricle conditions take 3 parts, a couple of early surgeries in the first two years and then a final, bigger op at around 4 or 5. They're described here on the LHM website. This set of surgeries is fairly new in heart surgery terms but are, on the whole successful and offer the children a decent quality of life. That said because they are 'new' (been done regularly for around 15 years) a true long term prognosis isn't known. I know children who are well and around the same age as dd (almost 16). I also know families who have lost children to single ventricle conditions.

It's a tough decision to make - to put your child through surgery with an uncertain outcome. You certainly need further clarification on the condition before you can make a fully informed decision. All of the single ventricle condtions can come in a 'simple' or more complex form and additional defects obviously increase the risks considerably. Have you been referred to one of the Children's Heart centres for further scans?

Thinking of you - I'll do my best to help with any questions you have although my personal experience isn't totally relevant to your situation. Take care.

saggarmakersbottomknocker Wed 16-Sep-09 22:37:15

Sorry forgot the link. Here

There is a MNer whose child has a single ventricle condition. I'll see if I can get hold of her.

peanuthead Thu 17-Sep-09 08:46:22

Thanks everyone for your replies. I suppose if it was just down to me I would prbably just go for it but DH really is adamant he doesn't want a sick child. Plus the thought of my baby being taken away at birth for life threatening surgery - not sure how I'd cope. Not being able to BF etc.

A single ventricle defect is really serious - basically they can patch it up but once the child is a teenager it will probably need a heart transplant - won't be cycling across the Alps - the consultant said by that time it may have problems walking upstairs...

I haven't yet contacted the heart charities - I'm not quite ready really until we get a clearer diagnosis. Plus I think they'll sway me towards going on with the pregnancy and I need to agree with DH. He won't contact them himself.

Our local hospital is St Thomas's anyway so we're at the Evelina childrens hospital and see the consultant again in 3 weeks.

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