Test for Tommy – every newborn baby deserves the test that could help save their life.
*please note this post contains a bereavement and could be a trigger*
I am supporting the Test for Tommy campaign launched by Tiny Tickers, the baby heart charity, which aims to place pulse oximetry test machines in every maternity ward across the UK. I know, when I was pregnant with my kids, if I heard that there was a quick, easy and painless test that could be carried out on newborn babies that could help detect potentially life-threatening heart disease I would have wanted them to have it. That test does exist, but isn’t part of the mandatory NHS newborn checks (NIPE). I think that this should change and that all newborn babies should have access to this simple test and that is why I am writing this post and supporting this campaign.
Tiny Tickers agrees and so they have created their latest campaign, Test for Tommy to help ensure that every newborn baby gets this simple test. The campaign is named in memory of baby Tommy, who died from undiagnosed heart defect at eleven days old.
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.
Currently in the UK not every baby leaving hospital has the pulse oximetry 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 through the placement of pulse oximetry machines in maternity wards across the UK.
Tiny Tickers have released two case studies that show the difference that the a pulse oximetry test can make… 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:
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 hope to fund 330 by 2021. But they need our help. Congenital heart disease is one of the biggest killers of infants in the UK.
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.
If you want to find out more check out Tiny Tickers:
Tiny Tickers Registered Charity No: 1078114