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Thanks hun.. I'm trying to think on the positive side of it, and today I am thinking 'thank goodness' because she's been a little madam all day long, lol.

Thanks for all the support here guys, xx
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My daughter also has CHD and Downs Syndrome. She has a mechanical heart valve and an obstruction. She has to take warfarin daily and if her levels aren't right is at risk of a blood clot. I can really relate to how you feel as it worries me to think something might happen when I'm not there too. The only way I cope is to think about how much worse I would feel if I never gave her the opportunity to try things and to try to do as much as other children do. It doesn't help all the time, but is a strategy that works sometimes!

I did find that a medic alert bracelet helped a little too - at least if something happens and I'm not there the information is available to paramedics.

I can't really offer any more advice but just wanted to reassure you that you're not alone.

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I'm sorry to hear that hun.. Sad

I really do need to get a medic alert bracelet.. Been meaning to get one for a long time now!

Do you feel like you are grieving? I feel like I am grieving for her future will be so different and I feel like I lost my healthy girl and instead she is subject to a life long of interventions, operations, tests here there and everywhere.
I feel so sad, I look at her some days and cry my heart out, literally, I keep asking why us - but of course no one really knows why. I just want the best for her (as any parent does!) and I know that the best of life isn't what she will get and it makes me really sad and depressed.

I don't want her to grow up and hate her scar, also that's a huge worry - she is already trying to cover it with stickers etc - Sad

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(06-16-2011, 04:55 PM)Busymumto5 Wrote: Thanks, both of you - I'm so sorry to hear of your childrens conditions too xx

I have hours at a time where I think Nursery will be a great thing for her, then I have hours like, worried out of my brain for her, I know she needs to live her life and become her own person, but I just don't want to leave her side in case she dies knowing the last faces she saw was strangers and not Mummy!

I have only raised £350 ish, £100 for the British Heart Foundation and £150 (the same amount the school managed to raise.. a whole primary school...!) for the Wallace and Gromits Grand Appeal, which is basically funding the Bristol Children's Hospital, where she had her surgery.

My other special needs child is the eldest boy and he is ADHD, etc (I think I mentioned that already) and he had his hypospadias operation corrected here too..

I can never forget the trauma we all went through watching her fighting for her life in Paediatric Intensive Care Unit, It was horrible, Sounds silly, but I wonder if Family Fund will help fund a defibrilator? I can dream I suppose.. I read about those new braces that are mobile defibs, they warn others to stand back while they shock the patient and tell them to call an ambulance etc..

Thanks for your replies and my love goes out to you both, it's so hard emotionally to parent a sick child, and part of me wants to slap people with healthy children when they moan that their child has had a cold for * days, Arghhh.. The way people don't cherish what they have and how they have it, makes me sooooo mad! X


Unfortunately Family Fund are not able to help with the cost of any medical equipment as this should be funding by the health authorities.

Best wishes,
Family Fund
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Nia, now 7, also was born with tetralogy of fallot and complete AVSD. She had successful repair surgery at Bristol when she was 19 months old and now appart from the scar right down her chest you would never know she had any cardiac problems. When she started at nursery I did a joint teaching session with our community children's nurse for all the staff. This gave me peace of mind that I knew the staff had received the right information, and the staff found it useful as they were able to ask questions, no matter how trivial or mundane and we all found it very useful.
It's totally natural to feel anxious about letting go - believe me I've been there and shed plenty of tears!!
All the very best x

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