Every Baby Needs An EchocardiogramGlobal

[kreamkrackers]

I have created a group on facebook and I'm trying to get as many members as I can to join. Here's some details from it:

Every baby needs an echocardiogram before they leave hospital to save babies lives and to prevent babies who have heart abnormalities getting so ill before it's detected.

This group is to help raise awareness for the need for every baby to have a routine echocardiogram after they're born. Most babies appear healthy at birth yet soon after they get home things can change dramatically, the lucky ones are the ones who survive yet many babies still die unnecessarily. I want every baby to have an echocardiogram before they leave hospital as a routine exam to the save the lives of our babies. If you feel you would like to join this group just to raise awareness or because you have had experiences with this please do so and get your friends to join too.

I am trying to set up a petition to get the government to allow every baby born to have an echocardiogram. Hopefully it'll all go through without any problems then we can really get the ball rolling with this and save the lives of babies.

this page

I hope the link works.

Please join this group and thankyou to everyone that has taken the time to look at this.

There are about 1 in 125 babies born with a congenital heart defect (the most common birth defect) about 1 in 3 are picked up antenatally.

The only way to test for DiGeorge syndrome is to perform a FISH test through an amniocentesis or chorionic villi sampling (risk of miscarriage with both).

It is currently estimated that as many as 1 in 1,800 of the population may be affected with DiGeorge syndrome.

Personally I'd rather have an echo done on a baby after birth than risk my baby dying.

Have signed. My DS had a heart check as normal practice on the day of his birth - this was in the States. He did indeed have a problem, now sorted, thankfully.

Well done for doing this.

Just a thought - would India Knight get behind this? I THINK her daughter Nell has DiGeorge's Syndrome (sp?).

Congenital heart disease is one of the major causes of infant death. I think it may be the main cause of infant death in the UK.

I thought I'd posted but it must have been a different thread!!

My daughter's heart condition wasn't found until she became ill several days after her birth. Her condition isn't connected to any "syndrome" but maybe some sort of routine testing very soon after birth could have picked it up-be it an echo,sats monitoring or whatever.

Two threads snorris - more coverage

Yes two threads for more coverage!

One in special needs section and one in health

My ds's VSD wasn't picked up until he was 6 months old and off the bottom of the weight charts. It took me going into the GP and having a hissy fit including stamping my feet and crying to get a referral to the paediatrician. My own GP told me I was an over anxious mother...ignored ds going blue and me having to prop cot up to help him sleep.

He was prem and in SCBU for a while, so one would have thought it would have been picked up earlier. He is now 12 1/2 y.o, the hole has nearly closed itself and he is at last thriving!

I had a baby who died of a congenital heart defect. Wishing you all the best with this. We was the same doctor as Ulrika at Guy's (Dr Sharland Ante natal heart unit - they were lovely). It wouldn't have helped our dd but if we hadn't known about her condition and we'd just taken her home it would have been devastating. (She had hypoplastic left heart.)

I'm so sorry for your loss swedishmum, your dd had the worst CHD there is

Scaryteacher - there are far too many stories like yours and that is why I'm hoping we can stop them. I think health profesionals should always listen to mothers as dd1 was in multiple organ failure and they were trying to tell me I wasn't bf her right for 3 hours whilst she was getting sicker and sicker and we're the lucky ones as our children survived.

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.

My sister died at birth from a heart defect.
My younger brother was given extra scans during the pregnancy and it picked up a condition that would otherwise have gone un noticed and would have killed him almost certainly within a couple of days of leaving hospital.

I hadn't been offered extra screening for DS but insisted on it with DD given my family history and i am gratefull i did. it picked up a small hole in her heart.
It currently causes her no problems as it is very small but it is something that we know about and can monitor.
i will join

NEW GLOBAL PETITION

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