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.

That's really shocking. I thought it was hospital policy in every maternity hospital for a doctor to check a baby out. It seems there needs to be a lot of changes to promote our children's health.

I think an echocardiogram would be a good idea. It might help to reduce the number of cot deaths.

I would do not agree with babies routinely having an MRI scan. Very high strength magnetic fields are used in MRI scans and I think the risks would out weigh the benefits.

There are theories that the magnetic fields associated with power lines can cause childhood leukemia. I would not want to subject a baby of mine to the high levels of magnetic fields used in MRI without good medical reason.

There are some children who are more high risk of having suffered brain damage. Ie. Those who are premature, born by forceps, or whose mother have had an excessively long labour, or other medical conditons who might benefit from screening.

Its something that would require research, careful consideration and thought as MRI scans are not risk free.

DD had loads of tests in SCBU as a newborn, including an ultrasound scan of her brain which they carried out to see whether she needed an immediate MRI (she was allowed to wait 6wks) Maybe newborns could have ultrasound instead as it's quick and easy and requires no sedation?

Reallytired is quite right about MRI, very bad idea indeed to expose newborns to this unless it is absolutely necessary.

WRT ECG, you need to work out whether this will be a. ethical and b. practical. How many babies would you have to screen in order to pick up one baby with a problem that requires treatment?

And how many parents would be caused unnecessary worry - investigations might well pick up things that aren't normal but would actually never cause symptoms at all. (I am no expert on ECGs but for example, MRI scans have revealed that loads of people including me are walking round with odd brains but have obvious results of this at all - no-one would ever have known before MRIs were invented.)

Also, how many extra doctors/nurses would you need to employ to do this? And how much longer would you be adding to each baby's stay in hospital? Multiply that by the annual birth rate (650,000 or so last time I checked) and there might be a bit of a resources problem.

And how many doctors/nurses have the right skills to carry out an ECG on a baby - is it easy or hard to do and to interpret the results?

Message withdrawn

I'd guess not that many doctors could interpret an ECG. It isn't an invasive test, and it doesn't look that hard to do either. It's just like the ultrasound scans that you may have had when you were pregnant.

The main thing is to compare the structures in and around the heart with a normal heart in a child of the same age/size. Eg, my dd's aortic root is larger than it should be because she has Marfan syndrome. It started to enlarge with no symptoms before she was 18 months old, and if it had gone undiagnosed then she might not be here with us today.

When dd (now 5) goes for her annual echo, we usually see a specialist from Birmingham that runs a satellite clinic where we live. The local paediatrician did the last one, and checked the results with the "main man" before she let us leave.

kreamkrackers, thank you. I'll look out for this group on Facebook.

Oops

Apologies, I changed a load of what I typed, posted without checking and it's a load of rubbish.

ECG = electrocardiogram

Echocardiogram = ultrasound scan.

Feel free to send me to the naughty corner

Message withdrawn

Sorry, think I may have caused confusion by referring to ECG - I think you normally have an ECG before an echo but I could be wrong and have no idea what the procedure is in babies.

My DS2 has di-georges syndrome and over eighty five percent of babies born with this have some sort of (mostly severe) heart abnormality. It isn't always picked up on the anomoly scan, and the babies usually become very ill in the first few weeks of life but often they have already gone home with parents thinking they're baby is fine.

When my son had his echo done it was a quick, easy and painless procedure, I am for as many helpful non invasive tests to be done as possible!

Totally agree with OP- my cousins child went home after birth seeming fine, had a heart attack very soon after. The ehart attack massively added to the problems with his heart, and he died aged 6 awaiting a transplant [ad]

Heart defects occur in 1 in 125 babies. Only about a third of these are detected antenatally. Some of the cyanotic conditions - the ones that cause blueness are recognised at birth or sometimes within a few days of birth but often in traumatic circumstances following the 'collapse' of the baby. It's the most common birth 'defect' (more common than Down Syndrome) and cardiac abnormalities also account for one in 10 infant deaths. Yet the only routine newborn check is a cursory listen to the heart sounds.

My dd has a significant heart problem, not diagnosed until she was 14 weeks.

I'm just starting to blog her story. It's here if anyone wants to read it (just the March archive would give you the gist though).

Her heart condition wouldn't be picked up antenatally (coronaries are too small), however it may have been detected by ECG/Sats monitoring. Early detection would have prevented several weeks of angina for her, two heart attacks, multiple organ failure and cardiogenic shock. The GP actually listening to me might have helped too but that's a different story

Sats monitoring is very simple and is being trialled on newborns at the Birmingham hospitals. Info here

ECG would require more specialist input but is still a cheap non-invasive test. I would expect that all maternity units will have Sats monitors and ECG machines already in place.

Echo would require yet more specialist intervention.

That's interesting, Saggars - looks like there is a good case for this although not necessarily echo - you linked to SATS. It just wasn't there in the OP which is why I asked for more info.

FWIW, I had an increased risk of ds having heart problems. Antenatal scan showed things looked OK but they were careful to explain there could be problems that can't be picked up before birth.

I think talking to the people who have authority and power in this area or are good at lobbying would be a sensible way of taking this forward. How about contacting AIMS, the Assoc. for Improvements in Maternity Services, the Royal College of Obs and Gyny, asking for a meeting with the minister responsible for maternity services, contacting constituency MPs and asking them for support?

There is a further issue here about lots of hospitals not doing any newborn screening checks - even the ones that have been approved by NICE already and that are recommended.

DS was properly checked and the problem found, but his eye condition is one that needs very prompt treatment in most newborns who have it to prevent considerable vision loss. A lot of (maybe 1/3 of) the other children who have it were diagnosed late because newborn screening just wasn't done at all and the result is that their vision is impaired. All they have to blinking well do is check for a red reflex in both eyes which seems like a job for a trained monkey, and they can't seem to do that.

Whilst an ECG is obviously a good idea, I think it would need a huge shift in attitude from the hospitals about the importance of newborn testing for it to happen.

sagger, i just read your blog, i didnt know how much you had gone through. Your DD is a real fighter, isnt she?

Riven, certainly with di-georges syndrome it is usually the cardiac defect that send the doctors down the route of genetics testing.

Our son doesn't (thank goodness!) have the cardiac defect of the syndrome so was only recently diagnosed. He does however have nearly every other symptom though, but thats a whole other story!

You have my utmost sympathy with regards to waiting to see a doctor properly upon discharge with a baby that has severely ill, it's really hard and I know I've felt on occassion that we almost didn't matter once he wasn't seriously ill iyswim. Because of this we had to wait four years for a diagnosis that probably should have been made at around twelve weeks.

Saggars, also agree with the SATS monitoring, it's so straightforward and had it been done at birth with DS it would have shown up the problems he had with his respiratory system.

Whilst I think that an echo for every baby would be fab - I don't see it happening TBH The Sats test would be a real step forward and an additional ECG even better.

I'm not really up to speed on current ante natal tests. Does everyone get a 20 week anomaly scan these days? - or only if there are problems flagged up through bloods and such.

Edam - As far as I am aware the main thing they look for antenatally is a four-chambered view of the heart and so will pick up major structural conditions like HLHS, but certainly not all heart defects as even at 20 weeks the structures are so tiny.

Again this article refers to ECG screening as opposed to ECHO. It's a European study which concludes that ECG screening is cost effective and a significant number of lives could be saved. It was mainly concerned with picking up cases of long QT which can be a cause of both infant and adult sudden death, although as a bonus they did find 4 cases of previously undetected ALCAPA (dd's defect) which if untreated usually results in death in the first year of life.

e veryone should be offered a 20 week scan, certainly (not always a 12 week scan, that varies). However, in practice the date of that scan scan can vary from between 18 weeks and 25 (IME alone) depending on demand for scanning equipment, time of year etc.

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

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

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.