Test for Tommy – newborn babies deserve a test that could save their lives

Newborn babies deserve a test that could save  their lives. That sounds like a no-brainer. One of the things that happens when you are a blogger and/or influencer is that you become aware of so many things that don’t go so great in our world. The good thing is you also have the honour of supporting good causes that just might change things.

Mums want to protect their babies

When you have your baby, all you want to do is keep it safe. I have an almost 19 year old and I still have that primeval instinct. What is someone or something was preventing you keeping baby as safe as they could be. 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?

Test for Tommy

Tiny Tickers, the baby heart charity, have created their latest campaign, Test for Tommy. Poignantly the campaign is named in memory of baby Tommy, who died from undiagnosed heart defect at just eleven days old. The ‘test’, they are referring to pulse oximetry testing.

Pulse oximetry testing

Pulse oximetry testing is a non-invasive test that can be performed just 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.

Case studies

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.

You can follow relevant hashtags on social media – #testfortommy, #pulseox and #chdawareness

You can follow @tinytickers on Twitter, Instagram and Facebook

www.tinytickers.org/test-for-tommy

Tiny Tickers Registered Charity No: 1078114

Test For Tommy

 

 

 

 

Cuddle Fairy
Musings Of A Tired Mummy

Lucy At Home UK parenting blogger

Shank You Very Much
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4 Comments

  1. mackenzieglanville November 9, 2018 / 1:34 am

    oh my goodness it really is a parents worst nightmare! Such a simple test could have saved his life, it is terrible that this is not always done. Good on you for helping raise awareness!!! Thank you so much for sharing this important post with #ABloggingGoodTime

  2. mackenzieglanville November 9, 2018 / 2:01 am

    Again I am back, just heartbreaking! Back with #StayClassyMama

  3. Emma November 9, 2018 / 7:32 pm

    Wow Kate, the things I have learned from reading your blog posts! I had never heard of this test until now, but having lost twice in pregnancy I cant imagine the pain of losing a child esp if a simple test could have prevented the outcome. Thank you for raising awareness. #BlogCrush

  4. Musings of a tired mummy...zzz... November 12, 2018 / 1:40 pm

    I had no idea about this test! I hope all hospitals offer it to newborns soon so that no other parents have to suffer the devastation of losing a baby like Tommy. Thanks for linking up with #stayclassymama

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