Everybaby needs an echocardiogram petition

[kreamkrackers]

I'm adding this thread as I need to get more people to sign our petition. In the UK 1 in 125 babies are born with a congenital cardiac defect and only 1 in 3 are found antenatally. When the other babies with CHDs are found it's usually when the baby is in a critical state or even worse as this accounts for 1 in 10 infant death.

Please sign this petition

here

more information on my facebook group

here

already been discussing on mumsnet

here

and

here

Sorry for posting all this again but the more people to sign the better. Thankyou

Have signed and joined the facebook site, I have a friend with a little boy with heart problems so i'm right behind you. Well done!!!

Thankyou

I've added pictures to my profile showing why this is important

Have signed the petition. I have a son with di-georges but he escaped the heart condition. I am very aware how lucky we are!

Well done kreamkrackers!

What other things does he have DiGeorge related? Amelia has

her heart condition
poor immune system
poor muscle tone although she has started walking around the house now
global learning delay
weakness to the left
possible autism although as she has global learning delays they aren't checking her for this yet
problems with her bowels
gastrostomy as she hardly drinks, has severe reflux and lacks chewing skills, although these are coming on all of a sudden
she has ashtma but that probably isn't from DiGeorge
we've also overcome a lot of other problems like
the flap in her throat didn't use to close over
she has a very small cleft in the soft palate but they decided not to operate
she had extra digits on both hands which weren't fully formed and have now been removed
and theres probably a lot more things that I just forget about as it's something we live with and we're that used to it they just don't seem different anymore!

Hi Joshua has
poor immune system
poor muscle tone, (he can walk and run but not for very long, and he has insoles in his shoes which seem to help.)
he has a moderate hearing loss
sub mucus cleft palate, we are waiting to see if they will operate. His speech is severely delayed.
he doesn't have asthma but he is under a respiratory consultant as he spent most of the first year of his life in hospital with chest infections, bronchillitus, pnuemonia etc, and still struggles now.

He was also born with a hernia which has now been operated on.

Oh and he also has funny little ears, although I think they are quite cute!

Although he is four and a half we only got the diagnosis just before Christmas, but your right you just get used to it and it's normal for him iyswim.

I think what you are doing is fantastic, I would be glad to help anyway I can! Caroline.

Thankyou. Just signing the petition and getting other people you know to sign it is what we need.

They do sound similiar, we have been plagued with chest infections often coming on at weekends for some reason and we often end up back in hospital. They're not as bad though now that Amelia moves about.

I noticed Amelia's ears being different from both our families within minutes of her being born. It's the left one that stands out the most as the skin at the top is a lot more folded over. Amelia's hearing isn't as strong on her left side as well but they said it had nothing to do with that.

I've been on a hanen course today run by speech and language and they were talking about babies communicating what they need by different cries. We never got that with Amelia as she had a quiet cry when she was born and after the first operation she lost her voice for months. On top of that Amelia was in a strict routine of trying to fit milk into her so she never felt hungry and therefor never cried for milk. She never cried if she'd pooed or through teething, the only time I remember her crying was if she was put on her front (from where she had the op) or when she was majorly constipated (ended up in hospital a couple of times cos it was really bad). Did you notice different cries for joshua?

Bumping up again for anyone who's not been on lately

And another bump

Bump, please sign the petition

Thankyou to everyone who has already signed the petition. Could you please check for your name as it appears some people who have told me they've signed it are not appearing on the list. When you sign the petition you will get an email from 10 Downing Street and you MUST click on the link to confirm that you're signing the petition. If you have followed all that and your name still isn't on the list would you please spend 5 minutes and email 10 Downing Street to tell them about this as we need more signitures. Thankyou.

NEW GLOBAL PETITION

www.gopetition.com/petitions/every-baby-needs-an-echocardiogram.html