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
Anne delivering virtual training
Anne delivering virtual training

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.

Virtual support groups for parents
Virtual support groups for parents
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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.

Jon & Zoe
Jon & Zoe

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We'd like to say thank you. 

This year has been unexpected and hard for many, including our tiny charity. It wasn't the year we were expecting but we have done our best to continue helping babies born with serious heart conditions, their families, and the frontline NHS workers who look after them. 

Congenital heart disease doesn't stop for Coronavirus. And neither have we. 12 babies will still be born today, and every day, with serious heart defects.

As a small charity, nothing we have achieved, or will achieve is possible without our generous supporters. From the organisations who fund our projects, to the virtual marathon runners, Zoom quizzers, banana-bread bakers and Facebook fundraisers who raise vital funds – without your support we simply couldn’t continue our life-saving work.

Thank you for helping us continue our work. And we hope you have a safe and healthy festive season.

 

Jon, Katie, Aimee, Vicky, Anne & Kym

Team Tiny Tickers

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Thank you so much for your past support of those facing congenital heart disease.

Today is Giving Tuesday, and we're writing to ask if you would once again consider helping us to support a heart family.

Today, and every day, 12 babies will be born with congenital heart disease (CHD). This Giving Tuesday 12 families will face the dangerous, unrelenting and indiscriminate foe that is congenital heart disease, but now in the added context of a global pandemic.

Imagine going to your 20-week pregnancy scan and finding out your unborn baby has a serious, life-threatening heart condition. Then imagine your baby is born and needs to have surgery within the first few days of life.

Now imagine all of the above, but having to face these challenges alone because of coronavirus restrictions. You have to attend your 20-week scan alone. You receive the devastating news of your baby’s diagnosis without the physical support of your partner or a friend or family member in the room. Then, while your baby is undergoing surgery in hospital, only you can stay with them. Imagine that the nurses and other healthcare professionals can’t give you a hug or even squeeze your hand, because we’re in the midst of a global pandemic.

During the past nine months, around 2,000 women have received a suspected diagnosis of congenital heart disease (CHD) at their 20-week scan, alone. Usually, up to 10 babies have an operation to fix their heart every day. Although the number of planned surgeries has reduced during the pandemic, hundreds of babies will still have had heart surgery during the past nine months, with parents and families separated during hospital stays.

Danielle's first son, Lennox, was born with a serious heart defect, which wasn't diagnosed until he was three days old - and already critically ill. Danielle and her husband Joe watched in horror as doctors fought to save his life. Luckily, they did. Lennox had open heart surgery and is now a happy, energetic two year old.

Two years later, Danielle was overjoyed to find out she was pregnant again. However, she and Joe were absolutely devastated by the news that this baby has a serious heart condition too. She says, “We were obviously so upset and I was just truly gutted. The one thing I had been saying during this pregnancy was that I just couldn’t wait to take my healthy baby home and enjoy all the newborn moments with no anxiety.”

As if their journey hasn't been hard enough, they've had to deal with their baby's diagnosis in the middle of a global pandemic. Danielle was initially given the news at her 20 week-scan, which she had to attend alone, while Joe waited in the car park. The family face a long hospital stay when their baby is born, but with current Covid restrictions, only one parent is currently allowed at their child's bedside at a time. 

Families like Danielle and Joe's need our support more than ever. 

They need information and advice they can trust and support from a community that knows what they are going through. They need to know someone is there for them during their darkest hours. 

Tiny Tickers does all those things and more. 

We can make sure parents know they’re not alone - that we and the heart community are always here for them. That’s why we’ve created hug buttons to give parents a virtual hug when they need it. They can take this button with them into hospital and to appointments to remind them that they’re not alone. It can be given to siblings, placed under pillows, or kept in pockets. 

A £10 donation, will provide one family with a virtual hug. Your donation will enable us to send one of our family support packs to a heart family, along with a hug button. And when you make your donation, you can also leave a message of support for that family.

Please help us to continue being there for them.

This Giving Tuesday, your £10 donation will help us send a support pack to a family who has just received the life-changing news that their baby has a serious heart condition. This package includes all the information they need about what they face, access to our supportive communities of heart parents and a hug button - so they can receive a virtual hug whenever they need it.

Nothing beats the power of a hug. Please help us send a virtual hug to a heart family today.

 

With warmest wishes,
Team Tiny Tickers

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Tiny Tickers is now on a slightly different path to the one we were expecting as 2020 – our 20th anniversary year – rang in. Although the UK is currently facing a huge public health emergency, a baby is born with a serious heart condition every 2 hours. That fact remains. We are here to help but only with your support. 

From 8 February to 14 February 2021 we'd love if you would join us in celebrating heart heroes everywhere by fundraising and raising awareness as part of Heart Week 2021

Though we don't know what the world will look like in February, we know that it's never been more important to help babies affected by congenital heart disease. 

Click here to sign up for a free Heart Week toolkit

How can you get involved? 

From tea parties to dress down days, baby cinema and yoga classes, to sponsored silences and office activities, we’ve had it all. Even walking across the Forth Bridge on the coldest day of the year and taking a leap of faith with a Heart Week skydive!

Whether you raise a little or a lot, Heart Week is the chance for you to use your imagination and come together with friends, family, colleagues and the community to show your support for Heart Heroes everywhere. Dress down days may be so last year, but there are lots of virtual tips on our website here.

When you sign up to take part you'll receive a free Heart Week toolkit full to the brim with ideas, advice and resources to help you have fun whilst fundraising! 

Covid safety

We don’t know what the world will be like in February so some of your ideas might have to look a little different from previous years. Above all else please follow government guidelines when making your plan.

Thank you for helping us ensure that every baby born with a heart defect has a fighting chance

 

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Organization Information

Tiny Tickers

Location: London - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @tinytickers
Project Leader:
Jon Arnold
London, London United Kingdom
$19,209 raised of $25,000 goal
 
324 donations
$5,791 to go
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