Active discussions

Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

**Today is Congenital Heart Disease Awareness Day**

15 replies

Potty1 · 14/02/2006 10:04

12th February to 19th February is Children's Heart Week and today is Congenital Heart Disease Awareness Day .

At 12 noon today there are balloon launches from the major children's cardiac centres. There will be 145 balloons launched at each centre - 144 red and 1 blue to represent the 1 in 145 children born with CHD. If you're in London, Birmingham, Leeds, Liverpool, Manchester, Southampton, Bristol, Oxford or Belfast you might spot one.

OP posts:
blueshoes · 14/02/2006 10:26

Thanks for letting me know, Potty1. Dd was born with CHD. The hospital that treated her (Guys, London) is first class!

Original poster
Potty1 · 14/02/2006 10:37

Blueshoes - the new Evelina Childrens Hospital looks marvellous from what I've seen on the television

Hope your dd is keeping well heart-wise.

OP posts:
TambaTheDragonSlayer · 14/02/2006 10:44

Thank you for mentioning this potty.

I lost my brother at 11 days old due to a congenital heart defect (although I can remember what its called - holes in heart and chambers messed up or something)

He was at Birmingham Childrens Hospital and my mom recently recieved his hospital notes (If you remember the big stories about children having there organs stolen from them and kept with out consent a few years ago - he was one of those cases) so this is a fitting time for the ballon thing for her.

blueshoes · 14/02/2006 11:08

Yes, of course, potty1, it is now the spanking new Evelina. It was 2 years' ago that dd got her VSD fixed and given the all clear.

Tamba, sorry to hear about your brother and the added distress of his lost organs . He is always with you and your mum.

Original poster
Potty1 · 14/02/2006 11:30

Tamba - so sorry about your brother The organ scandal is dreadful. My dd is also treated at Birmingham Childrens Hospital.

I'll add your brother to all the others in my thoughts today. I belong to an online community of parents of children with CHD and we have suffered some dreadful losses this year. There have been many amazing medical advances but sadly there are still lots of children who can't be 'fixed'.

On a more positive note though the American skateboarder Shaun White who won gold this week at the Winter Olympics has Tetralogy of fallots and has had a couple of open heart surgeries.

OP posts:
TambaTheDragonSlayer · 14/02/2006 11:32

Thanks

kreamkrackers · 14/02/2006 11:58

tamba that's awful news about your brother. it must have been so hard hearing the news about his organs.

potty medical advances have made it possible for my dd to be kept off the heart transplant list for now. hopefully she'll never need one, i dread the thought of going down that route but i know it might be something that needs doing in the future. i know how lucky i am that she is still here with me today. i really don't think i'd have been able to cope if she hadn't pulled through. all the staff from alder hey (and i'm sure every other hospital) are brilliant when a child goes in there for these operations, it makes it much easier to deal with.

also as we nearly lost our dd at 3 days old i think there should be more awareness made about chd, her heart murmour was picked up after birth but she was healthy until the duct closed over and we nearly lost her. i think hospitals should scan every baby born with a heart murmour to be on the safe side to stop something like this happening again. also when we were discharged we never got told the signs to look out for in case a child is going into heart failure, although this would probably scare people it would have really helped us to know.

Original poster
Potty1 · 14/02/2006 12:02

My dd too kk. She had two heart attacks before she was diagnosed and was in critical heart failure. Her heart function was so poor that they thought she'd never recover and being 12 years ago there were very few transplants offered to babies.

We went for her cardio appointment on Friday and whilst she'll never be fixed as such she's doing well for now. I'm very thankful for that {smile]

OP posts:
Original poster
Potty1 · 14/02/2006 13:38

Jeremy Kyle show - Channel 3

OP posts:
Amanda1 · 14/02/2006 13:41

Message withdrawn

Original poster
Potty1 · 14/02/2006 13:41

A brave little girl named Lucy and her mum.

She's such a star.

OP posts:
Original poster
Potty1 · 14/02/2006 13:51

So sad that your friend didn't get his transplant Amanda

OP posts:
Original poster
Potty1 · 14/02/2006 14:34

Bump

OP posts:
Heartmum2Jamie · 14/02/2006 21:41

Hi Potty!

Tamba, I am so sorry to hear about your brother, what a terrible scandle. My ds is also treated a Birmingham Children's. I will be thinking of you and your family tonight as well as I light a candle for all the heart angels.

KK, I couldn't agree more with what you said about scanning all babies born with murmurs. My ds had a murmur at birth that was not followed up, subsequently he was not diagnosed with his condition until it was almost too late, at 9 months old. Something so simple could have save our family from alot of worry & heartache

TambaTheDragonSlayer · 14/02/2006 22:17

Thanks, your thoughts are appreciated.

New posts on this thread. Refresh page