Help babies with serious heart conditions

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.

Links:

• For more information please visit our website