Help babies with serious heart conditions

It is not all bad news - whilst we are unsure as to the longer term impacts on rates of congenital heart disease (CHD), we have used the last year to reframe some areas of work, and progress new opportunities.

Even though our small charity is facing our toughest months in our 21 years we are still here... delivering support and services amidst the harshest of circumstances. So we wanted to share the good news; the news that has kept our spirits up during the pandemic.

FAMILY SUPPORT:

We continue working hard to ensure there is relevant support for parents facing their CHD journey. The ‘normal’ treatment of congenital heart defects is tough enough. Some elective surgeries are being cancelled; some units aren't operating; for urgent surgery only one parent can be at the hospital; outpatient clinics are cancelled or being changed at short notice, and support is having to be given at arms length because of social distancing. We therefore launched a new section on our website to support the emotional well-being of new parents who find themselves confronted with congenital heart disease. And during lockdown we have also launched a 'buddy' system whereby parents can get peer support by way of phone calls and text messages from a CHD experienced parent. 

Our new virtual support pilot support groups have received wonderful feedback. These peer support groups, led by professional facilitators, are a safe space for parent of children with heart conditions to connect and support each other. Thanks to the successof the pilot groups, we are taking this project forward from next week.

Read more about our support services here. 

PULSE OXIMETRY: 

Despite having to pause this project at the start of the pandemic,  we are continuing to place these potentially life-saving machines in maternity units across the UK. We still aim to have placed 330 machines across the UK by April 2022. You can see where our machines have been placed on our map here. 

SUPPORTING HEALTH PROFESSIONALS:

Sonographers are still undertaking pregnancy scans. Babies with congenital heart defects will still be diagnosed. The fetal anomaly scan is still the best opportunity to detect CHD before a baby is born. So we are here to support sonographers who are continuing to work through the most challenging of circumstances.

Communicating Unexpected News

We are helping to create new guidelines for sonographers that will help thousands of expectant parents affected by pregnancy complications each year. Research led by the University of Leeds will for the first time provide sonographers with specific words and phrases to be used consistently when explaining miscarriages, foetal deaths and anomalies during scans, including instances where congenital heart disease is suspected. At present, there is no standardised way of communicating scan findings, which can lead to increased distress for the expectant parents. Alongside this work, we will be developing a range of resources for sonographers that combine their experiences and those of our supporter families to offer support and advice covering the topic of communicating unexpected news. 

Virtual Training

While we have been unable to continue face-to-face sonographer training during the pandemic, we have developed new online resources and training to help sonographers be better able to detect heart defects at pregnancy scans. Our Head of Training, Anne, has been training sonographers via virtual sessions and has also developed condition specific webinars, to help health professionals better undertstand certain heart conditions.

We will continue visiting hospitals for training as soon as it is practically possible.

New Resources

We have been continually updating information on our website about different cardiac conditions - not only the most common ones, but also rarer, more complex conditions. The information covers the anatomical structure of the condition and how it can be spotted and treated. This information is also of use to parents - who often find the medical information at the point of diagnosis overwhelming and difficult to understand.

We are here to support healthcare professionals working with babies, children and families affected by CHD. Tiny Tickers offer a range of support materials to help families from the point of diagnosis and now, thanks to the generosity of our supporters, friends and funders, all these resources are in one place on our website and free for health professionals to download, print, share and use.

We are so incredibly grateful for your support, which has helped us navigate this unexpected and difficult period. 

As you may know, next week is GlobalGiving's Little by Little campaign. From the 8th-12th March, when you give up to £35 ($50) to support Tiny Tickers, GlobalGiving will match your generosity up to 50%. If you can make a small donation next week, we would be very grateful. Thank you.

Our CEO, Jon Arnold, has written about how our tiny charity has been navigating the pandemic & gives heartfelt thanks to all our supporters who help us to keep swimming during these turbulent times.

There’s a famous scene in Finding Nemo where Dory calls Marlin “Mr Grumpy Gills” and asks him “when life gets you down, you know what you got to do?”. The answer, of course, is to “just keep swimming” and, ever since we first watched the movie, it’s been something of a mantra for my wife and I during tough times.

When my daughter Zoe was a tiny baby on the paediatric cardiac ward in Leeds – firstly waiting for life-saving surgery and later recovering from it – I’d carry her along the ward to look at the fish tank. Just keep swimming. Just keep moving forward and, little by little, we’ll get through this.

Well, 2020 was the year that “just keep swimming” wasn’t just an attitude – it was an operational strategy. The plans we set for Tiny Tickers ahead of the dawning of the year were ripped up by the March 2020 lockdown as COVID-19 hit the UK.

All charities suffered. Much of our work had to be stopped because of pandemic restrictions. Income plummeted as lockdown took hold. In the first week of lockdown, our income fell by around 90% compared to an average week. Suddenly, “just keep swimming” was our main focus.

We took some tough decisions. CHD wasn’t going anywhere so neither, we pledged, were we. We kept the whole staff team in place, knowing that being there for families or health professionals who reached out to us during the most difficult of circumstances was just so, so important. I couldn’t have forgiven myself if we hadn’t tried – if a family had gone unsupported when they came calling, or if a diagnosis had been missed because we had furloughed staff or cancelled work that could have continued.

Then something wonderful happened. Just when we needed it most, you – our extraordinary supporters – came together and wrapped up our little charity in a great big protective hug.

You donated. You fundraised. You cycled laps of your garden on a tricycle; you ran virtual runs; you organised online events; you set up monthly gifts; you joined our lockdown quizzes – you came up with all sorts of inventive and generous ways to ensure we were raising enough income to keep our charitable work going despite everything.

My heartfelt thanks to everyone who helped us keep swimming during 2020. We genuinely couldn’t have done it without you.

As we find ourselves back in lockdown, we’re still forecasting a substantial reduction in our income compared with the previous year – probably somewhere around 30% by the time our financial year ends in April. But we are getting by and, in fact, have introduced a number of new charitable projects in recent months – from family support work to sonographer training webinars.

So, what of the future? How are we shaping up?

Well, it’s been a tough start to 2021. Just as we were planning to resume face-to-face sonographer training – our core work – new restrictions hit and our plans were paused once again.

But there are great steps forward too. I’m writing this blog as one of our pilot online peer support groups for parents meets via Zoom. A new project, funded by the National Lottery emergency fund, bringing CHD families together – providing friendship, support and resilience. A project I hope will grow into something very special in the coming months.

It’s shaping up to be our busiest year ever – continuing these new projects and, just as soon as restrictions are lifted and it’s safe to do so, getting our sonographer training fully up to speed again.

Some of that new work will include:

• New ways of training sonographers (including webinars and other online training);
• A project specifically to help sonographers communicate unexpected news;
• A new online hub packed full of cardiac resources for health professionals;
• New support packs for families at the point of diagnosis;
• Extending the emotional wellbeing section on our website;
• Expanding the online peer support groups I mentioned above;
• Continuing to provide pulse oximetry testing machines – we’re approaching nearly 200 placed in hospitals across the UK, a fantastic landmark.

We’ll need your help, of course, to keep swimming. That protective hug you placed around us in 2020 will need to stay in place so we can keep doing what we do. We’ll never take your support for granted – our aim is to keep earning your trust and loyalty by being open and honest about the challenges we face; the opportunities we have; and the way in which we spend the money you raise and donate.

I’m loathe to predict the future – both personally or professionally – during such uncertain times. No doubt there will be moments when the waves feel like they are crashing down on us; and it takes all our effort to keep our head above water. But, likewise, I’m hopeful there will be other days when we all feel that we’re swimming with the tide – when we’re making excellent progress and things seem that little bit easier.

The main thing is, whatever the coming months throw at us, and the CHD community, Tiny Tickers will be here for you. Keep safe, and just keep swimming.

Links:

• Our Annual Report
• Keep updated by following us on Instagram
• Jon's blog