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Congenital heart defect

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

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.

saggarmakersbottomknocker Wed 16-Sep-09 20:36:48

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 22:26:03

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.

snorris Thu 17-Sep-09 07:40:44

Hi, my 3 year old dd4 has a single ventricle condition although hers affects the right side. As she was diagnosed at 12 days old I can't help with the pregnancy side of things but certainly have a lot of experience of afterwards! I won't go into full details now, I don't know how much you want to hear!! If you want to chat off board either CAT or email hoitytoitytiger-mumsnet at yahoo dot co dot uk.

peanuthead Thu 17-Sep-09 08:49:07

Oh Snorris thank you - will email you/cat you - that's really kind of you.

I want to know as much as possible really - bad especially as there's so many positive stories out there they become diffciult to believe. We're away for a few days now but I will contact you when we get back.

saggarmakersbottomknocker Thu 17-Sep-09 10:15:44

Thanks for popping in snorris smile

It's a difficult decision and personally I'm grateful it was one I didn't have to make but there are obviously positives in finding out in pregnancy if you decide to go ahead.

If I was in your situation now, knowing what I know then I would continue but it's such a personal decision affected by other things too. I know you have read positive stories - have you signed up to the Heartline message board because some of the other stuff isn't visible to non-members? That said, I think it's difficult to get a really balanced view because even parents who've had, and lost children to serious heart defects cherish that time they've had and wouldn't have not done it IYSWIM. Do you have other children peanuthead?

At the risk of offering another positive story having spent much of the first two years of her life in severe heart failure, transplant discussed etc my dd went to Portugal this year with the Childrens Heart Federation Teen forum - did raft building, swimming, kayaking etc - several of the teenagers on the trip have HLHS or other single ventricle hearts. These children are ill for periods of time, on permanent meds but inbetween are well, coping in mainstream school etc.

Anyway - I've gone on and on, again, I saw on the other thread that you're with the Evelina. Hopefully you can get a clearer picture over the next few weeks which will help. Have a good few days away. Thinking of you x

TheFoosa Thu 17-Sep-09 10:23:47

my sister has a congenital heart defect, she had open heart surgery at 15 to replace a valve (sorry, can't remember exactly what)

she is 35 now and very healthy

snorris Thu 17-Sep-09 13:05:37

I guess there are so many positive stories because obvoiusly that's what we all want to hear.

Enjoy you're time away and maybe hear from you soon .

snorris Thu 17-Sep-09 13:06:40

Oops! your blush

LouLovesAeroplaneJelly Thu 17-Sep-09 13:15:26

I just wanted to let you know that there are some good stories out there. My sister (now 25) has a similiar condition. It was not picked up until she was 18 if you can believe that. Apparantly a lifetime of playing in the dirt and not being on antibiotics was the main reason she was healthy. Her 16month DD has one, her 1wk DTS has one, my father has onem ,my half sisters have one. Everyone is healthy and living life normally. Remember to think the best and not the worst!

ZiggyMama Sun 27-Sep-09 18:03:13

Hi Peanuthead

I've left a msg on one of your other threads before, but just wanted to say how sorry I am for your diagnosis & that it isn't unrelentingly bleak. Please call LHM as Saggermaker suggested - there are lots of families out there with single ventricle conditions who have both positive & negative experiences so you can get a more rounded picture. Facing the rest of your pregnancy with this is very hard, but there are unfortunately many of us out there.
Wishing you love & support. x

Heartmum2Jamie Mon 28-Sep-09 11:38:52

Hi,

I'm a mum of a child with a heart condition, although he does not have a single ventricle condition & he was also not diagnosed until he was 9 months old, so I'm not help on the pregnancy side of things either. I am grateful for that I didn't have to make any decisions while pregnant. I also can't offer anything other than a positive story. Not much help, am I?!

I can only agree with what they others have said especially about getting in touch with LHM, but I think asking somewhere like here, you will be hard pressed to find anything other than positive stories as people are more likely to share good news, especially when it is something as complex as childen's heart conditions.

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