Today’s post is something that I feel is very important and more awareness needs to be made. I am helping and supporting Tiny Tickers with their campaign, in loving memory of baby Tommy, to further improve early detection rates of congenital heart disease. This will be done by placing pulse oximetry machines in maternity wards across the UK. Tiny Tickers are aiming to place 330 machines in maternity wards across the UK by 2021.
The post below is a pre-written blog post by Tiny Tickers to help raise awareness and raise money to make sure that every baby receives a pulse oximetry test. Having heart conditions myself and also previously having Wolff Parkinson White Syndrome, which, after two heart operations when I was 19, was gone. WPW Syndrome is an underlying heart condition that was not picked up until I was 19 after having an operation on a different part of my body and under anesthetic.
The campaign launched yesterday, with exclusive coverage in the Daily Mail, which you can find here.
Imagine if you were about to have a baby. Now imagine you’d heard that there was a test that could be carried out on all newborn babies – a quick, easy and painless test that could help detect potentially life-threatening heart disease. You’d want your baby to have that test, wouldn’t you?
Tiny Tickers, the baby heart charity, thinks so too and that’s why they have created their latest campaign, Test for Tommy. The campaign is named in memory of baby Tommy, who died from undiagnosed heart defect at eleven days old. And by ‘test’, they are referring to pulse oximetry testing.
Pulse oximetry testing is a non-invasive test that can be performed a few hours after birth and measures a baby’s blood oxygen levels. With a simple probe attached to baby’s head and foot, you get a reading within seconds. Low percentage levels could be a sign of a heart problem, meaning the baby would be sent for further examination. This would then start the chain of events that would hopefully save their life.
At present, pulse oximetry isn’t part of the mandatory NHS newborn checks (NIPE), meaning not every baby leaving hospital has the test. One in 125 babies are born every year with a serious heart condition and, at present, 1000 leave hospital with no-one knowing they have a potentially life-threatening illness. Tiny Tickers wants to change that, by creating a safety net for those 1000 babies. They are doing this by placing pulse oximetry machines in maternity wards across the UK.
Let’s look at two babies, born with the same heart condition and see the difference a pulse oximetry test can make…
When Tommy was born, he displayed all the signs of heart failure that his mum, Natasha, now knows about – his skin was a blue colour, he didn’t want to feed, he was always asleep and cold to touch. Natasha knew something was wrong and voiced her concerns to numerous medical professionals, but it was too late. Tragically, at 11 days old, Tommy passed away. Tommy’s post-mortem showed he had Transposition of the Great Arteries, a heart condition that can be treated with surgery. Natasha is now passionate about ensuring all babies receive a pulse oximetry test because, if Tommy had been tested, he may still be here today.
Tom was also born with Transposition of the Great Arteries. Unlike Tommy, he received a pulse oximetry test after birth. His oxygen saturation levels were dangerously low and his heart condition was diagnosed soon after the test. Tom had open heart surgery at eight days old and is now approaching his third birthday. His mum Nicola, forever grateful for the pulse oximetry test that helped to save his life, says, ‘Without the pulse oximetry test, which is currently not a compulsory part of newborn testing, we would have been sent home. It terrifies me how differently our story may have turned out.’
Sadly, the horror Nicola can only imagine, is a daily reality for Natasha. The stories of two babies with similar names and the same heart condition end so differently because one was offered a pulse oximetry test and the other wasn’t. It’s that simple.
Tiny Tickers has already placed 70 pulse oximetry machines at hospitals throughout the UK and, through the Tommy’s Test campaign, they seek to fund 330 by 2021. But they need our help. With congenital heart disease being one of the biggest killers of infants in the UK, there’s no time to waste.
All babies deserve the best start. Help Tiny Tickers to make sure every baby receives a pulse oximetry test by donating today. For more information, and to donate to the Test for Tommy campaign, visit www.tinytickers.org/test-for-tommy or text BABY46 £5 to 70070 and help support more tiny hearts.
Natasha says, ‘I can never explain to someone the pain of losing your baby. It’s a pain nobody wants to imagine or ever feel’. Let’s help Tiny Tickers ensure no more babies die from an undiagnosed heart condition. Every newborn deserves the test that could save their life. Thank you.
Tiny Tickers Registered Charity No: 1078114