Providing life-saving machines for heart babies

Thank you for supporting our Pulse Oximetry campaign and helping us to fund more machines across the UK. We really couldn't do what we do without the support of our generous donors. With your help, we have now funded 139 machines across the UK, from Shetland to Sussex.

Pulse Oximetry testing helps to detect heart defects by measuring oxygen levels (oxygen saturation) in the blood. It uses a light sensor to assess the level of oxygen in the baby’s blood. The test is carried out using a pulse oximeter, a specialist machine that is used routinely throughout the world to measure the amount of oxygen in the blood. A small probe is wrapped around the baby’s hand and foot and connected to a small machine that measures the baby’s oxygen levels by shining a light through the skin.

In the USA, where pulse oximetry screening is routine for all babies, a large study has reported that death from critical heart defects was reduced by one third in babies offered the screening compared with those who were not offered it.

Currently only around half of the babies born in the UK are offered this test – meaning around half will not be tested. Whether or not a baby has the test depends on the hospital of birth. If the NHS was to recommend this test as part of mandatory newborn screening, then all babies born in the UK would be offered it.

The NHS has been considering routine pulse oximetry screening for critical heart defects in newborn babies born in the UK for a number of years. The UK National Screening Committee (UKNSC) launched a public consultation in August 2019 on its recommendation not to make the test mandatory. If that recommendation is passed, it means it will continue to be up to each individual NHS Trust whether or not to offer pulse oximetry testing – and that means the postcode lottery of whether a baby is offered the test will continue.

The NHS is now considering the public response and is set to make a final recommendation on pulse oximetry screening in the early part of 2020. Here at Tiny Tickers, we passionately believe that every baby should have access to this test - and we're continuing to campaign for the test, and to fund and place pulse oximetry machines in UK hospitals. 

Thank you for your support.

Links:

• CEO's Blog - The Pulse Oximetry Test - for every Tiny Ticker
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On November 8th, 1999, Tiny Tickers was born - created to give babies with congenital heart disease a better start in life.

We're had a big impact in that time - helping to double the UK's average antenatal detection rate of CHD, and we have now placed 127 pulse oximetry machines in maternity units around the UK - but there is still so much more we can do to help babies, their families, and the health professionals who look after them.

We've only been able to help so many babies so far because of the wonderful generosity of you, our amazing supporters. Thank you so much for everything you've done for Tiny Tickers over the last 20 years. 

Back in 1999, I had no idea the path my life would take – the journey that would
eventually lead me to joining Tiny Tickers. I was too busy learning about the world of
work; bracing myself for the final episode of Gladiators; and trying to get the
earworm that was Mambo No.5 out of my head.

You see, that’s what CHD does. It doesn’t discriminate. It just happens. Wham – it
rips up the plans you make and sets you off on a journey no one would chose and no
one can understand unless they’ve walked the same path.

So, 20 years into Tiny Tickers’ mission, how are we doing? I think, for a small charity,
we have punched above our weight and made a big impact.

There are now around 250,000 adults living with CHD in the UK – that means that more adults are alive with CHD than children, and is a fabulous testament to improvements in diagnosis, surgery and treatment in recent decades. But all too frequently, here at Tiny Tickers, we hear from families that haven’t had a positive outcome – including babies whose CHD has only been detected for the first time after their deaths.

I’ve seen what the NHS is capable of doing once a baby is in their care, and I want every baby to have that same chance as my daughter, Zoe. Tiny Tickers has come a long way, but we still have so much more to do to ensure no baby dies before their heart defect is spotted.

Your support has got us as far as we have over the last 20 years; and that support will drive our next 20 years. Thank you for being there when we've needed you.

Jon Arnold,

Heart Parent & CEO

Links:

• Helping tiny hearts for 20 years.