Help babies with serious heart conditions

We were delighted to have been involved in this important research project, led by Dr Judith Johnson & the University of Leeds, to create the first ever world guidelines for sonographers communicating unexpected news during pregancy scans. I shared my own experiences on BBC Breakfast last month. You can catch up here. 

This project has meant a lot to me as I have personal experience of being a parent being on the receiving end of unexpected news – my daughter’s heart defect was first spotted at my wife’s 20 week pregnancy scan.

The way you are told about your baby’s potential condition can have a profound impact on what follows and how you as expectant parents cope with it. Our sonographer did a good job – she was honest, clear and compassionate in the way she told us about our unborn baby’s heart.

At Tiny Tickers, we hear the full range of experiences from the families we support, and also hear from sonographers about how tough it is to suddenly come across a possible problem and have to let expectant parents know without any time to prepare.

This research project has seen sonographers, psychologists, charities and parents with lived experience combine to create the world’s first set of guidelines to help sonographers with the really, really challenging task of communicating unexpected news. It’s really important work and we’re delighted to have been involved. 

We are so grateful to all of you who support us week in, week out, month after month. Your support means we are able to do so much more to help babies with serious heart conditions, their families, and the NHS heroes who look after them.

Thank you for reading,

Jon

Links:

• Helping Sonographers Communicate Unexpected News
• Follow us on Facebook
• Follow us on Twitter

We wanted to drop all of our supporters a note to say a big thank you for your continued support during these difficult days. And I do hope you are staying safe and well.

We are trying our very best to keep going - however we're a tiny charity and as a health specific organisation, we are not entitled to any of the UK Government funding packages. We continue to provide existing services where possible. We continue to offer training materials and resources to health professionals. We continue to be a voice for patients and parents, and to work with the NHS and service providers. We continue to offer information, advice and support to families.

The Coronavirus pandemic has forced us to change the way we help our beneficiaries. Unfortunately, we've had to pause three of our key projects due to Government guidelines and to enable NHS hospitals to focus on their critical role responding to the pandemic. For the time being, we have suspended face-to-face sonographer training, and have paused our projects placing pulse oximetry testing machines and situs dolls in NHS Trusts. We remain fully committed to these key projects and will resume them as soon as it is right to do so.

All our other work continues, and we are also working on new ways to help health professionals and patient families at this most difficult time. This includes developing new digital resources for sonographers and support services for families.

A baby is born with a congenital heart defect every two hours in the UK - Coronavirus doesn't change that fact. Much of what is normal in our lives may have shut down, but our cause has not closed. Therefore, Tiny Tickers remains focused on doing what we can to help babies with CHD, their families, and the health professionals who look after them.

Once again a huge thank you for helping us to keep supporting those facing the challenges of congenital heart defects at the worst possible time.

I hope you are well,

Kind Regards

Jon, Tiny Tickers CEO

Links:

• Find out more about our work
• Follow us on Twitter for all our latest news