Help babies with serious heart conditions

by Tiny Tickers
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Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions

At Tiny Tickers, we want to increase early detection rates of cardiac conditions because we know that spotting a defect early can improve a baby’s chances of survival and long-term quality of life. One of the main ways we do this is by training the sonographers who carry out pregnancy scans (20 week scans) to have the skills and confidence to detect heart defects in unborn babies.

To further assist the sonographers who scan babies at pregnancy scans, we created the situs doll. Each doll will help sonographers assess the tiny hearts of the babies they scan at 20 weeks gestation. This Giving Tuesday we have been asking for donations towards providing these dolls to hospitals around the UK. So far we have managed to raise nearly £800, with 66 dolls named and ready to be sent to hospitals in the UK.

Our Head of Training, Anne Rhodes, explains why she created situs dolls and how they help save lives:

‘One of the first things a sonographer does when starting a 20 week anatomy scan is to find out which way round the baby is lying.

Babies can lie in any position in the womb and this changes all the time as the baby moves around. They can be lying with their head up towards mum’s head, they can be upside down or on their side, curled up or stretched out.

It is important to work out which is the left and right side of the baby because the sonographer needs to check that the baby’s internal organs are in the right place.

Understanding which way round the baby is lying inside the mother is one aspect of the scan that can be very challenging. Working out where the baby’s head and spine are and then imagining the position of the baby can be difficult.

To help with this, while out delivering training to sonographers, I came to realise that by physically placing a baby doll (the same size as a 20 weeks fetus) over the mothers abdomen in the same position as the baby is lying, it helped the sonographer to work out the baby’s right and left side.

Then, I dressed the doll in a t-shirt which has an anatomical diagram of the heart on.

This helps the sonographer see which way the heart should be pointing. The heart diagram also has lines through it and these demonstrate where the scan probe should be over the heart to obtain all the views required by the sonographer in accordance with the fetal anomaly screening programme.

This is a simple, effective and practical way of confirming orientation and helps the sonographer to obtain the views they need when the baby is in different positions.’

 

Our mission is to ensure that every sonographer has access to a situs doll, to assist them with scanning unborn babies. Each doll costs just £10 and will help a whole sonography team in a hospital as they scan thousands of pregnant women every year. 

You can read more about this exciting update on our website www.tinytickers.org

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Our Impact
Our Impact

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 - 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 & Tiny Tickers CEO

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On Monday 5th August 2019, Tiny Tickers was delighted and humbled to be chosen as one of the Duke and Duchess of Sussex’s Forces for Change charities.

 The royal couple had previously turned to their 9.3 million Instagram followers and asked for suggestions for ‘someone you look up to, the organisation doing amazing work that we should all be following, an account that inspires you to be and do better (or that simply makes you feel good), or the handle that brims with optimism for a brighter tomorrow.’

As a project, Forces for Change intends to shine a light on smaller, lesser-known charities and organisations. Thanks to nominations from many supporters, Tiny Tickers was selected as one of the 15 charities to be followed by @sussexroyal during the month of August.

Tiny Tickers CEO, Jon Arnold, says, ‘It was a wonderful surprise to have been chosen by the Duke and Duchess of Sussex as one of their 15 Forces for Change charities. Already we’ve seen a tremendous increase in awareness of the charity, our work, and the CHD cause globally. Forces for Change is a fabulous project and it’s humbling to be a part of it, alongside 14 other fantastic organisations. We’re so grateful to the people who nominated us and, of course, to the Duke and Duchess for their support.’

‘We’ve run out of words to explain what this means to us and the difference it will make to our work,’ says Tiny Tickers Head of Fundraising and Communications, Katie Lawson. ‘It has been a wonderfully bonkers week for our tiny charity. We’d like to say a huge thanks to our fabulous supporters. This would never have happened without them helping us spread the word and raising awareness. All of this is because of them.’

For a very small charity, with only five members of staff, this kind of exposure will make a huge difference. Everyone at Tiny Tickers would like thank the Duke and Duchess of Sussex for their invaluable support. The awareness it provides will undoubtedly help save many lives.

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On Monday 5th August 2019, Tiny Tickers was delighted and humbled to be chosen as one of the Duke and Duchess of Sussex’s Forces for Change charities.

 The royal couple had previously turned to their 9.3 million Instagram followers and asked for suggestions for ‘someone you look up to, the organisation doing amazing work that we should all be following, an account that inspires you to be and do better (or that simply makes you feel good), or the handle that brims with optimism for a brighter tomorrow.’

As a project, Forces for Change intends to shine a light on smaller, lesser-known charities and organisations. Thanks to nominations from many supporters, Tiny Tickers was selected as one of the 15 charities to be followed by @sussexroyal during the month of August.

Tiny Tickers CEO, Jon Arnold, says, ‘It was a wonderful surprise to have been chosen by the Duke and Duchess of Sussex as one of their 15 Forces for Change charities. Already we’ve seen a tremendous increase in awareness of the charity, our work, and the CHD cause globally. Forces for Change is a fabulous project and it’s humbling to be a part of it, alongside 14 other fantastic organisations. We’re so grateful to the people who nominated us and, of course, to the Duke and Duchess for their support.’

‘We’ve run out of words to explain what this means to us and the difference it will make to our work,’ says Tiny Tickers Head of Fundraising and Communications, Katie Lawson. ‘It has been a wonderfully bonkers week for our tiny charity. We’d like to say a huge thanks to our fabulous supporters. This would never have happened without them helping us spread the word and raising awareness. All of this is because of them.’

For a very small charity, with only five members of staff, this kind of exposure will make a huge difference. Everyone at Tiny Tickers would like thank the Duke and Duchess of Sussex for their invaluable support. The awareness it provides will undoubtedly help save many lives.



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Tiny Tickers is a small charity but our work is hugely practical and effective and we hope you enjoy reading about how your support has helped give heart babies a better start in life.

What your support has helped us to do:

- Fund vital life-saving equipment - not every CHD condition will or can be diagnosed. By placing pulse oximetry machines in maternity wards we can provide another method of detection. Placing pulse oximetry machines in hospitals ensures any heart defects are picked up early, and that the baby and family, have access to the life-saving treatment they need before that baby experiences heart failure.

These machines can indicate possible heart or respiratory issues quickly and effectively by measuring the amount of oxygen in the blood. Low oxygen levels can be a key sign that a baby could have a critical heart defect. This is a very simple test that could help identify cases quickly and effectively, leading to immediate referral if required. Not every baby will be born visibly displaying signs and symptoms and without this machine serious defects could go undetected.  

- Sonographer training - Tiny Tickers is the sole provider of hands-on, hospital-based cardiac screening training for sonographers throughout the UK. The specialist fetal cardiac training enhances the confidence and skills sonographers need to detect heart defects during pregnancy scans. Training sonographers how to better detect heart conditions at 20-week pregnancy scans is Tiny Tickers’ core activity. Tiny Tickers aims to increase early detection rates of cardiac defects – since we were founded nearly 20 years ago, the national prenatal detection rates in the UK have doubled from 23% to around 50%. Since 2016 we have trained over 1193 sonographers in over 108 hospitals in the UK.

- Improving standards - ensuring the voice of parents and the needs of babies are heard by those setting standards in CHD services. We are patient and public representatives on; NHS England’s Clinical Reference Group for CHD, the NHS England National Review of CHD services’ Programme Board, and the advisory panel for the National Congenital Anomalies and Rare Diseases Register.

- Raising awareness - our awareness campaign ‘Think 20’ informs and empowers parents-to-be about their 20 week scan; while ‘Think HEART’ raises awareness of the five potential signs of undiagnosed CHD; knowing these five signs could save their baby’s life. As a result, mums-to-be are more informed about their pregnancy scans; health professionals and new parents know the signs of undetected heart conditions; and the general public is more aware of just how common and serious heart defects can be.

- Family information - It is truly devastating for new parents to find out that their baby has heart problems, and the volume of medical information can feel overwhelming. We recognise the need to complement medical material with more practical information and peer-to-peer advice. Diagnosis is an exceptionally difficult time, and often families don’t know where to turn for support and practical advice. We ensure that our suite of materials gives parents the information they need to navigate this challenging time. We have produced videos and new diagnosis booklets that help support parents and families dealing with a diagnosis. We also run a private online forum for heart families.

Tiny Tickers is the only UK charity working to improve prenatal detection rates of heart conditions in babies and our work has a direct and significant impact on national detection rates of heart defects. Our work delivers real life-saving results to heart babies, their families, and the health professionals that look after them. We’ve continued to ensure the voice of parents is heard, and their views valued, by those who set standards in CHD services. And we continue to be a source of comfort and support to all those heart families facing a new diagnosis or an uncertain future. We are a small charity, but with the help of all of our supporters and the heart community, we can continue to deliver a huge impact for all tiny hearts. So thank you. We couldn't do what we do, without you.

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Organization Information

Tiny Tickers

Location: London - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @tinytickers
Project Leader:
Jon Arnold
London, London United Kingdom
$21,290 raised of $25,000 goal
 
384 donations
$3,710 to go
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