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
Tiny Tickers' training conference in Sheffield
Tiny Tickers' training conference in Sheffield

We have entered a new chapter for Tiny Tickers with the start of our new regional training model for sonographers and health professionals. Kicking off with a conference in July 2015 for 50 sonographers across Yorkshire, this model will allow us to train 200 sonographers this year across Yorkshire and the Humber to be better able to detect heart condition during pregnancy scans. 

We hope, subject to funding, to be able to roll this model out to two other regions/nations in 2016. 

With national prenatal detection rates currently at 47% (they have doubled since Tiny Tickers began training in 1999), our aim is to get to 80% detection rates across the UK. At present, there is significant variation from region to region, with Merseyside's detection rates being only 26.9%. Our vision is that every baby born with a serious heart condition will be given a fighting chance, wherever they are born in the UK.  

With 1,000 newborns in the UK sent home every year with an undetected heart condition, there is much we need to do. Your support plays a vital role in ensuring our work is as effective as possible. Thank you. 

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It's been a very busy few months at Tiny Tickers - we are about to kick off a big project to train 250 sonographers working across Yorkshire and the Humber to be better able to detect congenital heart defects in babies during the 20 week pregnancy scan. This will make a huge difference to the 500+ babies born every year in the region with a potentially life-threatening heart condition. 

As part of this project, we are going to be producing a series of e-training videos for health professionals that gives a clearer understanding of how to detect each of the 4 most common heart defects during an ultrasound. These videos will be accessible to any sonographer as and when the need arises. 

In addition, we have begun writing family support materials for those parents with a new diagnosis and will be aiming to have these packs ready to send out to those who need them by the autumn. 

And finally, we are also working hard to redevelop our website so that parents and professionals can access the information and support they need. 

All of our projects are working to ensure that babies with a heart problem get the best start. We are delighted that prenatal detection rates of CHD has increased from 42% to 45% across the UK in the past 2 years. We want them to be even higher but this is great progress! 

Thank you so much for your support. 

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Honey
Honey

Plans are going well as Spring arrives for Tiny Tickers. We are working hard to deliver our first regional training of sonographers who feed into one of the specialised cardiac centres in the UK, aiming to start training from June. This will mean we can train 250 sonographers before the end of 2015 - smashing our previous capacity - making sure that they are best equipped to spot a heart defect during pregnancy scans. 

This will mean that more heart defects can be detected in babies as early as possible - giving them a fighting chance. Put simply, the earlier a baby’s heart defect is detected, the better the outcome for that child.Without your support, we wouldn't be able to deliver this. Thank you. 

Honey was born in October 2014. Her mum, Grace, spent the early weeks of Honey’s life asking health professionals about her lethargy and lack of weight-gain, yet no alarm was raised. Finally, just before Christmas, her doctor checked Honey’s heart and discovered a murmur.

Honey was 7 weeks old when she was finally diagnosed with a serious heart defect. By this time, she had gone into early heart failure and, at 10 weeks old, Honey weighed just 6 lbs. Thankfully, Honey has now had surgery and is in recovery. However the distress and subsequent health problems endured by Honey and her family could have been significantly reduced had Honey's heart condition been detected earlier.

Thank you so much for all your support - together, we can help babies like Honey and give their hearts a better start. 

Grace and Honey
Grace and Honey

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Baby Mia
Baby Mia

Thank you to all our supporters for their vital support and interest in Tiny Tickers. You have helped to make a real difference for babies like Mia - this is her story. 

Mia was born with a hyperplastic aortic arch in her heart - a narrowing which limits bloodflow. Thankfully, a sonographer spotted it during mum Alison’s 20 week scan. They received specialist care for the rest of the pregnancy - extra scans, consultant-care and monitoring of Mia’s heart throughout birth. Thanks to this prior knowledge, when Mia was born she was immediately transferred to the neonatal intensive care unit and put on a Prostin drip to keep a small duct in her heart open.
Then she was taken to a specialised cardiac unit where, at just three days old, Mia had open heart surgery. Almost three years later, Mia is a happy and active little girl. Alison says: “If Mia’s defect hadn’t been noticed during the scan, I would have delivered normally at my local hospital and she wouldn’t have had the drip fitted that kept her alive for three days before her operation. We are so grateful for the early detection of Mia’s condition."

We have ambitious plans for 2015 and your continued support will help us to reach even more babies with congenital heart defects and their families. 

Currently only around one third of life-threatening heart defects are spotted before birth - so two out of every three babies with major CHD have to take their chances when it comes to someone spotting their condition. 

As in Mia’s case, early detection improves survival rates and quality of life. We believe every baby with CHD deserves the best chance possible and, together, we can make our vision a reality. Among our plans for 2015, we aim to:

- Provide expert cardiac training to more sonographers in one year than ever before

- Offer support to more families - helping those who have just found out their baby has a heart defect through new information packs and peer-to-peer support projects

- Grow our new Big Tick campaign to inform parents-to-be about their 20 week scan and their baby’s heart health

With your help, we are able to achieve so much. Thank you and we wish you a happy and healthy 2015. 

The Tiny Tickers team

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Mia today
Mia today

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Our work to improve the detection, diagnosis and care of babies with congenital heart defects in the UK continues.

We are continuing our core work on training sonographers in NHS hospitals in the UK, and have exciting plans to extend the scope of our services in early 2014.

We continue to work to improve standards - as part of the NHS clinical reference group overseeing congenital cardiac services; as part of the patient and public engagement group for the current NHS England review of services; and as a member of the steering group for a national pulse oximetry testing scheme.

We are about to launch a major new national awareness campaign for mums-to-be - which promises to be one of the most exciting projects in our history. We'll be launching at The Baby Show - a three-day exhibition at Olympia in London in late October that has 20,000 visitors.

We are taking on more staff to help deliver the growth needed to provide these and other projects - we have recruited two part-time fundraising staff incuding new Head of Fundraising Harriett, and two interns joined us for the summer period under a scheme run by the University of Leeds careers service.

We continue to be moved and inspired by the experiences of CHD that our supporters share with us, and by the phenomenal fundraising efforts of many supporters. In recent months it has been running season - we've had supporters pull on a Tiny Tickers running shirt in a variety of events - including the world's largest half marathon, the Great North Run; the British 10k London race; and Run To The Beat. We're grateful to each and every fundraiser and those who donated to them.

Please feel free to follow us on Facebook and Twitter (@tinytickers) or via our website – www.tinytickers.org – and to give us feedback on info@tinytickers.org. We’re only able to do this work because of the generosity of our supporters, so thank you.

Many thanks for your support,

Jon

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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
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