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Original poster

December-Heart babies.

46 replies

survivour · 07/12/2003 14:35

I just wanted to know how many heart baby parents we had on mumsnet, as you can tell, I'm bored.... I have 3boys, youngest is 16months old and has TOFs.(4defects of the heart)

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Original poster
survivour · 23/12/2003 12:58

FF, here here!! if I could have gone through that pain for my baby, I would have done twice over....
2under2 well done both of you!!!! keep us informed??? I feel so happy when I hear of a baby that has a heart problem, that is older than mine, it is the encouragement I need, that I'm not the only one that still worries, even though we have had our repair. Of what tomorrow will bring. New year 2003 was very stressful, we were waiting for surgery, then the baby had 10 blue spells on new years day, we spent those 3 days in hospital, he finally had his op, on 18th Feb, now its coming round to that time of year, I can feel the panic welling up inside again.....
misdee.... yes what a waste of time.... and that waiting for the appointment takes it out of you.... good luck for February, it was a special month for us, hopefully it will be for you too.

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jessmack · 31/12/2003 08:52

misdee, how annoying, there is nothing worse than waiting for appointments, dreading the worst. Hopeful though the fact that they are not in a hurry means they are not too worried.
survivour, i am exactly the same, I know so much about heart defects now because of those long hours of research on the internet. I also know how you feel coming up to the anniversary of surgery. It was one year since dd's surgery in december and it brought all the emotions flooding back...be prepared!
Hope everyone had a wonderful Christmas, and Happy New Year to you all.

Luckymum · 17/01/2004 16:38

Survivour - you seemed a bit down when you posted on Happy hour yesterday . I passed through but didn't get time for a 'drink' or to post. Are you OK? Can they do anything about ds's palsy?

kittie · 17/01/2004 18:21

I have hypertrophic cardiomyopathy HOCM. Also had open heart surgery when I was 2 to replace Pulmonary valve. Was born with pulmonary Stenosis Was diagnosed with HOCM when I was 14. Now 23. No treatment for HOCM just to be careful!!!.
My consultant told me that it was rare to have both these heart condtions, you either get one or the other. Anyone have the same heart conditon as me?

SueW · 20/01/2004 09:13

This reply has been withdrawn

This has been withdrawn by MNHQ at OP's request.

Festivefly · 20/01/2004 09:25

Sue i can't recommend one but there are loads on the web. I just did a search hope this helps Good Luck and i'm sure you will get lots of support om here

jessmack · 20/01/2004 09:42

There is an online group on yahoo called CHD-UK . There is also an organisation called Heartline which has an online meassageboard, and support groups around the country. These groups aren't specifically for people who are pregnant with a baby with a heart defect, but there is usually someone who is going through/has gone through the same thing.
Hope that helps

SueW · 20/01/2004 10:28

This reply has been withdrawn

This has been withdrawn by MNHQ at OP's request.

Luckymum · 20/01/2004 10:55

SueW - the two groups mentioned previously Heartline and CHD UK are both really supportive. Also this charity have a helpline who will try to find info on your friends baby's heart condition.

Kittie - Its always nice to hear from grown-ups with CHD, glad you are doing OK

eidsvold · 23/01/2004 21:33

SueW - Heartline are also at the end of the phone - they gave us a pack when dd was having her heart surgery.....there are others - children's heart foundation was another one we were referred to although we went with the Down's heart group as dd has down's syndrome as well as a heart defect - they were very helpful.

Dh and I found out about dd's heart defect at 21 weeks pregnant.

Did lots of searching via the web for info about her heart condition - friend might find she will then be able to contact a group relevant to her baby's specific heart defect as there are some of those around.

SueW · 23/01/2004 23:12

This reply has been withdrawn

This has been withdrawn by MNHQ at OP's request.

kiwisbird · 23/01/2004 23:18

My Darling daughter has Moderate Pulmonary Stenosis.. low weight gain and a gorgeous smile
15 mths and conquering the world with a grin
Guts is all I can say, a pure star

Original poster
survivour · 18/02/2004 11:25

I had to bump up this thread....... My 18month old son is celebrating his 1st anniversary for our TOF; heart operation, his scar is bearly visible. I just had to share this with all of you!!!!!!!

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motherinferior · 18/02/2004 11:51

That is wonderful.

Festivefly · 18/02/2004 11:54

Brilliant Survivour, thats wonderful news, i bet you feel so different from a year ago, thank god you can put that terrible time behind you.Well done to the pair of you

Original poster
survivour · 18/02/2004 11:58

Thank you girls, yes I do! Will take all 3 boys out today, and celebrate on our own, I could not do that last year, we were all over the place, this year we will be holding it together, with the help of mumsnet of course!!!!!!

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Festivefly · 18/02/2004 12:03

Have a lovely day

Original poster
survivour · 18/02/2004 12:06

Thank you! I have shared this with all of you first!!!!!!! Family comes in about second place right now.

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Festivefly · 18/02/2004 12:20

Good

Luckymum · 18/02/2004 19:24

Survivour.....its me (from heartline) just though I'd say congrats here too!!

Original poster
survivour · 18/02/2004 19:32

oh hello there! luckeymum, pleased to meet you!!!!

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