Every Baby Needs An Echocardiogram

[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.

If anyone has any advice or ideas on how I can get this promoted further please let me know. I want to help all babies born with CHD that haven't had it picked up during the 20 week ultrasound (about 2/3 of all CHD babies go undetected, 1 in 125 babies are born with a CHD in UK)

My dd4 also has a heart condition (pulmonary atresia with VSD) that was undiagnosed until 12 days after birth. She was actually born at home and it was by chance that my HV was there when she became ill. I had scans at 12 weeks and 20 weeks,the 12 week scan gave me a risk of 1:14 for Downs Syndrome,the possibility of a heart condition was mentioned very briefly and at the 20 week scan they only did the routine check of the four chambers-no problems found there.
S ended up staying in hospital for nearly 10 months,having 3 operations to insert shunts and various cardiac catheters. She collapsed several times and ended up in PICU. In July 2006 we were told she wasn't going to make it . Fortunately she proved the doctors wrong and has just celebrated her 2nd birthday

Thankyou for sharing that with us snorris. Lets hope the government will listen to us and stop this from happening.

what a great idea i was lucky my little girls heart defect (i hate the word defect) was picked up at my 6mth scan but i have met alot of parents which have taken there little ones home then becoming very poorly these little heart babies need more support from the wider public

kk - the charity Tiny tickers are involved in improved foetal screening. I'm not sure if they are doing anything with regards to newborn screening. Maybe they could offer some information. Also this is the home page for the Birmingham study They may have some opinions on newborn Echo. Or what about the Childrens Heart Federation?

Whilst I absolutely know there is a need for newborn screening I think that it's unlikely that Health Authorities will make the leap from no screening, to an Echo for every child. I hope that doesn't come across as a defeatist attitude - it's just that certainly at present the equipment and skills just don't exist. How many of us, for example don't have a children's cardiac centre locally? I have to travel 60 miles for mine. Maybe Sats and ECG as standard newborn tests are a more realistic target at least to begin with?

Prehaps cardic screening will save the NHS money because children will not develop brain damage and other complications as the result of untreated heart problems.

The newborn hearing test has saved the governant money because deaf babies get help faster. Digital hearing aids or cochelar implants means that many deaf children develop normal speech so need less help later on. The newborn hearing test required more audiologists and sophisicated equipment.

However I think its WRONG that a lot of developmental checks have been phased out. Also the wait for SLT, audiology, physio or many other services is too long. It is no good having a problem diagnosed and not getting help.

Totally agree, an efficient process for newborn cardiac screening is essential.
DS2 had several Echo's, (no heart defect, just PDA due to prematurity) while in SCBU & always carried out by a senior consultant.
If this was included in the pre discharge checks the hospital would grind to a halt - this doesn't mean babies shouldn't be checked just that they need to find a way to make it work.

Far from getting decent screening, have found out tosday Sebastian gets checked by a special MW now instead of a PAediatrician- and ahs to wait 2 days for that

not sure how impressed I am by that tbh- long way from the ideal!

My ds had a foetal echo, and a further echo as soon as he was born(due to me having a heart condition that has a 50% of being passed on) He's now on yearly echos.

Some adults can have a benign type of this heart condition and might go through life not even being aware of having it as it doesn't always cause symptoms. But the condition can have drastic consequences on the baby, and infant death can result. So yes I would love to see every baby have an echo.

PETITION is here (although they only accepted my first draught which was rushed so sorry about that but I think the title says it all really!)

PLEASE SIGN
here

and get everyone you know to sign.
Thankyou xxxxxxx