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Original poster

Every Baby Needs An EchocardiogramGlobal

38 replies

kreamkrackers · 05/04/2008 19:21

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.

OP posts:

Wallace · 05/04/2008 20:14

I will join the group, but will have to join FB first.

misdee · 05/04/2008 20:21

have joined.

i had fetal cardiac scans with dd3, but these werent followed up with an echo after birth. i asked for all 3 dd's to be screened due to dh heart problems, turned out that dd1, who was 6years old at the time, has a leaky valve. its a minor thing, but i feel better knowing.

Saggarmakersbottomknocker · 05/04/2008 22:34

Thanks for this kk. I've joined

I'm in the process of blogging dd's story.

It's here It's long, nowhere near finished and I don't expect everone to read it but suffice to say had she had one or two simple, non-invasive tests early on she wouldn't have had two heart attacks, multiple organ failure and cardiogenic shock. She wouldn't have suffered irreparable damage to her heart muscle.

Original poster

kreamkrackers · 05/04/2008 22:49

Thanks for sharing that. Once it's finished please post a link on the group for other to read so they will join in and sign the petition that we can hopefully get going which will hopefully stop other babies going through what our babies went through.

OP posts:

madcol · 05/04/2008 22:56

Sorry to hear about what happened to your babies.
Knowing how things work inthe NHS I would be surprised if a scheme for routine echos for all newborns was going to be easy to establish. I don't mean to be pessimistic or to say that you're not right but in my experience the goverment bodies , NICE etc. are very unlikely to take long term viewpoint when it comes to helath expenditure.

Do you know if pre-natal Ultrasound near term with good views of the heart can help risk-stratify babies?

madcol · 05/04/2008 22:56

Do you know if pre-natal Ultrasound near term with good views of the heart can help risk-stratify babies?

Saggarmakersbottomknocker · 05/04/2008 23:01

It's unlikely that my dd's defect would have been picked up ante-natally. Many of the late dxd defects are acyanotic (don't cause blueness) and therefore wouldn't be detected by a Sats test but even that cheap, simple test might save lives. I understand that newborn Sats testing is being piloted in some Birmingham hospitals.

madcol · 05/04/2008 23:15

It's infuriating that all types of screening are difficult to establish because of the cost. Generally the NHS takes the attitude of waiting for problems to become apparent rather than trying to predict them.

Have you got some heavy-weights behing you like Great Ormond Street or other large paediatric unit Cardiologists?

Original poster

kreamkrackers · 06/04/2008 14:03

No I've not got any health professionals backing this, it's a great idea though so I'll have to look into it. The funding might be a problem but if it prevents so many babies dying or getting critically ill before their heart defect is detected it could save lives and save money for them on the babies that don't end up needing weeks of intensive care treatment even before they have their operation which is very costly. If enough people back this then I'm hoping the government will listen.

OP posts:

shit · 06/04/2008 14:05

what does an echocardiogram entail?

Original poster

kreamkrackers · 06/04/2008 14:10

Here's Amelia's story that I've added to this group and this is why I want to promote this

Amelia was born healthy, she had a heart murmour but that was all (although i thought her ears looked really different to ours as soon as she was born and she also had an extra digit not fully formed on both hands). We had her home and on the 3rd day she stopped breastfeeding, started to make gasping breathing sounds, looked a grey colour and became cold.

She was taken into our local hospital as the one she was born in wasn't in catchment area. We were in A and E for over 3 hours with a nurse telling me I was obviously just not feeding her right as I was only a young mum and she was my first but in my heart I knew something was wrong. We finally got transfered to a children's ward and as soon as the paediatrician looked at her we were rushed out the room. The next time we seen our beautiful baby was when she was hooked up to all the machines fighting for life. She stood a 30% chance of survival.

A team from Alder Hey came and transfered Amelia. We were told soon after she arrived (although it felt like forever) about her heart condition and what they thought had caused it. I didn't care about the DiGeorge syndrome I just wanted her well again. It was confirmed and we were told more about it. The ears, the extra digits and the quiet cry were all beginning to fit in with the symptons.

It took two weeks before Amelia was well enough (although she was still on life support) for her to be able to go in for her rare heart op, she was possibly the youngest in the world at the time to go through it (or so we were told I'm still confused over it all and even though I try to find out what's going on with her heart my head just doesn't seem to be able to take it in fully!). The operation took over 11 hours and she came out feeling so cold and was just completely white. Her chest was left open from all the swelling and she was possibly going to have to go back into theartre. It was awful. They gave me a sleeping tablet and told me I needed to get some sleep and off I went not knowing what was happening yet I wanted to stay with my daughter but it just seemed like we were in the way.

Luckily Amelia didn't go back into theatre. They told us her chest would probably stay open for a few days and she had 3 chest drains in. It took 2 weeks for her chest to finally be closed as the swelling wouldn't go down. Soon after that we were moved to the children's cardiac ward and 5 weeks later after getting her off oxygen, getting her liver at reasonable levels and getting her to keep in enough milk to gain weight she was allowed home.

This is what Amelia's heart is from a hospital letter written by a junior doctor: interrupted aortic arch, ASD, large VSD, and subaortic stenosis that was repaired with a danus kaye stansel anastamosis and closure of VSD with insertion of an RV to PA conduit. The conduit was then replaced with a Contegra conduit and also a left pulmonaray artery plasty and stenting.

Here's a video I found on youtube which I also added

here

This is why this is so important, I want to stop babies getting so ill or dying from an undetected CHD

OP posts:

Original poster

kreamkrackers · 06/04/2008 14:12

It's a test like an ultrasound scan you have when you're pregnant that looks at a baby's heart. It's causes no pain and no side effects and could pevent babies getting critically ill or even dying from an undetected CHD

OP posts:

Original poster

kreamkrackers · 06/04/2008 14:15

Forgot to put, Amelia went into multiple organ failure due to her CHD being undetected at birth if Amelia had been left any longer she wouldn't be here today

OP posts:

shit · 06/04/2008 14:16

ah ok, so absolutely no side effects. quick, easy and cost effective?

sounds like a plan. i wish you luck in your campaign.

have just joined your fb group.

Original poster

kreamkrackers · 06/04/2008 14:19

I have read many stories of babies born with CHD going home and collapsing at home as it's been undetected. Many babies are born with innocent murmours and that's what we believed Amelia's was, however a lot of CHD babies don't even have a mumour before they get discharged.

OP posts:

Original poster

kreamkrackers · 06/04/2008 14:25

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)

OP posts:

madcol · 06/04/2008 19:12

Would rally support from CHD and GUCH ( grown-ups with CHD) patient groups

Ask for professional support from specialist paediatric cardiologist/ cardiologists in general and paediatricians

Research if any celebs have had children with CHD who could lend support and increase profile.Didn't Ulrika Johnsons child have a problem.

Once more established - write to something like THIS MORNING to gain higher profile

Are you confident in being the public face of this project?

Original poster

kreamkrackers · 06/04/2008 19:42

I get very nervous seeing people in real life. It's easy for me to write things down but I've always been shy. I'm sure I could find another mum who will campaign for this who's been through similiar to what we've been through to be the public face.

I definetly need professionals to help and a celeb would be a good idea.

Thanks.

OP posts:

madcol · 06/04/2008 19:50

Mumsnet sounds like a good place to start.

If you generate a letter you could circulate to hospital units. Would take a bit of time and organisation and I would get the letter 'reviewed' by someone medical as well particularly if you're targetting medical support.

May be recruit help through Mumsnet - ask people to find out the referral centres in their areas for paediatric cardiology and get Consultant lists from their. Don't forget allied specialists such as physiotherapists; midwives ' PICU staff and Consultant nurse specialists and echocardiographers. They may have useful info to help.

(Quite a few Drs. are mumsnet members.)

fakeblonde · 07/04/2008 10:49

Have you heard of the Pulseoximetry study ?
Sorry to be so pessimistic but i dont think the gov. will ever pay for every baby to have an echo.
Pulsox is a cheaper test and being researched in birmingham and 1 shropshire hosp at the moment.
What they are doing is a simple oxygen saturation reading on all newborns at or soon after birth.
Those with a low reading are then given an echo-its already saved lives as is still in the research stage.

Original poster

kreamkrackers · 07/04/2008 16:27

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

OP posts:

belgo · 07/04/2008 16:33

This is my dd1's story here in Belgium: Problem free pregnancy, but the day after she was born the doctor checking her detacted a slight bradycardia. The same day she was taken down for an electro cardiogram and an echo cardiogram. Both normal. She is now four years old and in full health.

That's the standard of care babies receive here in Belgium; and that should be the standard of care they receive in the UK as well.

PABLOP · 07/04/2008 16:34

I've just signed x

137wallis · 07/04/2008 16:36

have signed the petition, I wish you the best of luck, please keep us posted!

probablyaslytherin · 07/04/2008 17:48

What is the statistical probability of the average newborn baby having a heart problem?

I can't see the Government paying for a procedure which is not justified in terms of cost v likelihood of occurrence.

In your own case, (having read your story), if your dd had been diagnosed with diGeorge earlier they would/should surely have checked her over for heart probs? So in some respects the fact that no-one picked up that she had diGeorge was part of the problem.

Sorry if this all sounds a bit brisk - not meant unkindly

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