Help babies with serious heart conditions

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, with most recently training being provided in the north west and the midlands.

We are delighted to report Public Health England has agreed a pilot scheme for pulse oximetry testing. This is a simple, effective test that can pick up signs of heart defects, and the pilot will look at the benefits of all newborns being given this test before leaving hospital. Around 1,000 newborns head home each year with their major heart defect not having been spotted, so any efforts to improve this are to be applauded. Our key focus is on improving prenatal detection, and feel that pulse oximetry testing could be a vital safety net for those occasions when defects are missed during pregnancy.

We are continuing to play a key role in influencing NHS England’s new review into congenital cardiac services in England, including as part of the patient and public engagement group alongside other relevant national and regional charities and support groups. NHS England have recognised the need to improve prenatal and newborn detection rates as a one of the six objective of the new review, and we are working with those leading this objective to make sure the patient and carer voice is heard.

We are developing projects further training initiatives, and an awareness campaign for mums-to-be. We are taking on more staff to help achieve this growth - two interns will be joining us for the summer period under a scheme run by the University of Leeds careers service; and we are currently adding for a part-time fundraiser to also join the team.

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 we have seen 22 supporters conquer the Yorkshire Three Peaks, plus fundraisers running various races on our behalf. We'll have teams of runners in the British London 10k, Great North Run and Run to the Beat events in coming months. One supporter, Nicole Richardson, will be climbing Mount Kilimanjaro, the highest mountain in Africa, to raise funds for us!

In our last report we mentioned fundraiser Ed White, who took on the Marathon des Sables – the world’s toughest footrace over six days across the Sahara desert – on our behalf. We're delighted to report that Ed completed all 155 miles of the race and, together with colleague Charlie Prentis, raised a phenomenal £30,000 to be split between Tiny Tickers and Charlie's charity, Parkinson's UK. Hats off to both - what an achievement!

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