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
Thank you from tiny hearts
Thank you from tiny hearts

Happy World Heart Day!

Every year, on the 29th September, we celebrate World Heart Day. It's a global movement to raise awareness of heart disease and, for Tiny Tickers, an opportunity to spread awareness of congenital heart disease (CHD).
 
We also see World Heart Day as a benchmark, to reflect on what we have achieved over the past year.

Since last World Heart Day we have:

 Trained 532 sonographers, giving them the skills and confidence to detect heart defects during pregnancy scans (we've trained 2142 sonographers in total since 2016).
 Placed 163
 life-saving pulse oximetry machines, which can detect heart defects in newborn babies, in maternity units across the UK. This brings the total amount of machines we've placed since 2017 to 408.
 Hosted 10 virtual support groups and 13 drop-in sessions, helping 59 heart parents needing support during their journey - from their baby's CHD diagnosis, to open heart surgery and beyond.
 Reached 146,456 new people with our Think HEART message - the five key signs that a baby may have an undiagnosed heart condition.

We couldn't do any of this without your support.

Thank you for helping us keep tiny hearts beating.

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Sonographers at Leeds General Infirmary
Sonographers at Leeds General Infirmary

Thanks to a partnership with Children's Heart Surgery Fund (CHSF), last month sonographers at Leeds General Infirmary received our vital training to help them detect the signs of serious heart conditions in babies at the 20-week pregnancy scans.

 

With the support of CHSF, and your very generous donationns, Tiny Tickers is delivering hands-on, hospital-based cardiac screening training for sonographers throughout the Yorkshire region. The training covers the most up-to-date NHS recommendations on what sonographers should look for when examining the heart as part of the 20-week scan.

 

Tiny Tickers CEO, Jon Arnold, is also a heart parent as his daughter, Zoe, received life-saving open heart surgery at Leeds General Infirmary. He says, “Early detection of congenital heart disease (CHD) can help save lives and we’re very proud of the part we’ve played in helping make sure more babies than ever before are being detected prior to birth. ”

 

Zoe was born 14 years ago with a congenital heart defect. Zoe’s heart condition was picked up at Jon’s wife, Andrea’s, 20-week pregnancy scan at Leeds General Infirmary. Jon says, “Zoe was diagnosed with a complete atrioventricular septal defect – a big hole in the middle of all four chambers of the heart, and one valve where there should be two. We also learned at the scan that she would have Down’s Syndrome. She is Daddy’s little princess. A very precious little princess.”

Jon continues, “Early detection of congenital heart defects in babies greatly improves their chances of survival – and this is where Tiny Tickers comes in. We’re dedicated to helping sonographers do the very difficult job of detecting heart defects during the 20-week scan and we’re delighted that CHSF are supporting us in our aims.”

A baby is born with a serious heart condition every two hours in the UK and CHD is one of the biggest killers of infants in the UK. Around half of congenital heart defects are picked up during routine antenatal scanning, but approximately 1,000 newborn babies leave hospital each year with their heart defect undetected. These babies are at serious risk of heart failure and death if their condition is not diagnosed in time.

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Jon Arnold
Jon Arnold

Annual reports can be complicated to read, so I’ve set myself the challenge of summing up the key points from the Tiny Tickers annual report and accounts for the 2020-21 financial year in just one paragraph. One succinct paragraph that covers the basics. Here goes…

Blimey. The year the Covid pandemic hit. Our income went down, but our awesome supporters rallied round and our staff team gave everything they’ve got. Together, and despite it all, we increased our charitable work and helped more families than ever. I’m so immensely grateful to everyone who helped us.

There you have it, the year in a nutshell. But how can you possibly summarise a year that was so complex; so unexpected; so full of fear; so different to those any of us had ever experienced?

I swung from fearing the worst for our little charity when the pandemic first hit and our funding took a huge fall; to being overwhelmed with gratitude as our supporters stepped forward and things picked up again.

Some of our charitable work had to pause during lockdowns – we couldn’t travel to hospitals to deliver sonographer training, for example. But we adapted and launched new online training instead. And our family support work increased enormously as people turned to us more – so we introduced new virtual peer support groups.

In other words, we ripped up the plans for the year and focused on responding to what health professionals and families affected by CHD most needed in unprecedented times. I like to think we succeeded.

Our financial situation remains healthy. By the end of the year, income was recovering and, compared to the year before, was only around 10% down. I’d have bitten your arm off for that back in March 2020 when the first lockdown was announced and everything seemed so bleak.

We balanced our spending – investing money saved by not being able to deliver face-to-face training in other charitable projects. We made sure – even more than normal – that every pound spent was necessary and was helping our mission. We ended the year with solid finances and ready to weather whatever the pandemic continued to throw at us in 2021-22 (spoiler alert – the pandemic hasn’t gone away but, thank goodness, neither have YOU our amazing supporters and funders).

Our full accounts are set out within the report, as well as more from me plus a summary from our chair of trustees, and I would urge you to read it. This is your money – funds you’ve raised and donated – and you have a right to know how we are spending it, and to see that we are running the charity sensibly in order to make sure we are here helping families affected by CHD for many, many years to come.

My final thought when reflecting on our financial performance during 2020-21 isn’t actually about pounds and pence. It’s about passion and perseverance. That’s what the tables of facts and figures say to me when I look through them. Those are the qualities that I saw every day – from our staff team; from our supporters; from the health professionals we work with.

All of us are united by our passion to help babies with congenital heart disease; and the perseverance shown to not sway from that mission despite all the challenges thrown at us is what defines the year for me.

It was a privilege to see that in action, thank you to everyone who played their part.

 

Thank you for your support,

Jon

Heart Parent and Tiny Tickers Chief Executive

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Thank you so much for your past support. We are so very grateful. It is only thanks to people like you that we can continue to support babies with congenital heart defects. It is only possible because you care. 

Today, around 12 babies will be born in the UK with serious heart conditions. Six of these babies will have been diagnosed during pregnancy. The other six will be born with no-one knowing they have a poorly heart.

A pulse oximetry test is the quickest and easiest way to ensure these six babies receive a diagnosis as soon as possible. 

We have been placing pulse oximetry machines in UK maternity units since 2017, supplying both bedside and handheld machines. Early detection of heart defects improves a baby’s chances of survival and long-term quality of life. Babies who are discharged from hospital without a diagnosis may fall into heart failure before anyone knows how critically ill they are. Treatment for congenital heart disease has advanced rapidly in recent years. Most babies with heart conditions will go on to live a full life – if they receive treatment in time. Tiny Tickers aims to ensure they make it to the operating table. 


Pulse oximetry testing, which can help detect heart defects in newborns, is not part of the mandatory NHS newborn checks. We believe every baby deserves the test that could help save their life, which is why we place these potentially life-saving machines in hospitals.

Today is Giving Tuesday, the day of GlobalGiving, and we’re asking you to help us raise £1,452 so we can place six potentially life-saving handheld pulse oximetry machines in UK hospitals.

Each of these handheld machines symbolises one of the six babies who will be born today with no-one knowing they have a serious heart condition. Each machine will test thousands of babies every year, meaning those with undiagnosed heart conditions will have a better chance of surviving and thriving.

Tiny Tickers’ mission is that every baby with a serious heart condition is diagnosed as soon as medically possible. Today, we need to find the six babies who have been sent home with an undiagnosed heart condition.

Will you help and donate today? Just £6 will help us to ensure six babies get the test that could save their life, TODAY.

A huge thank you for your support. Your help means that ALL babies born with congenital heart disease have an equal chance of fighting, and ultimately beating, their condition.

Thank you. 

Leo
Leo
12 babies, six machines
12 babies, six machines

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Remembering all the babies who are missing from our arms but who we hold in our hearts forever.
Last week was Baby Loss Awareness Week. 

We've been remembering all those little ones who left too soon and continue shining brightly in our lives. Over the week, we shared their stories, raising awareness and joining in the Global Wave of Light at 7pm on Friday 15th October.  

As those who have experienced it know, baby loss is more than just a week. It's 24 hours per day, 7 days per week, 365 days per year.

Everyone at Tiny Tickers sends our love to bereaved parents - today and every day. 

Support
 

Supporting bereaved heart parents is an important part of our work. We want to share their stories. We want to help them celebrate their children. We want to connect them with other bereaved parents. We want them to know they are not alone.

If you are a bereaved heart parent, please visit our website where you can find details of our bereaved heart parents support group, read other parents' stories and find information and advice on living with loss.  

Oscar's Story  

At her 12 week scan, Liz was surprised to find out she was expecting twins. Her 20 week scan showed that one twin, Oscar, had a heart condition. Sadly, at 27 weeks, Oscar passed away. She delivered both her boys at 33 weeks and tragically Oscar’s brother, Felix, also passed away in while in NICU.

Liz says, "Six years later we still struggle to process what happened. We’ve since had our rainbow who has now started school. It can feel like Oscar got lost in the nightmare following his death, so writing this is to help redress the balance. One of the hardest things was trying to explain what was happening to our older children and to keep going for them whilst our world fell apart around us."

Read Oscar's story: https://www.tinytickers.org/2021/10/11/oscars-story/

Forever in our hearts

Many bereaved parents find comfort in creating an online tribute page for their child. This space, like an online memory box, can be filled with memories (photos, music and videos) and shared with family and friends. You can also share funeral details, light candles, write messages and give gifts. It is possible to use your tribute page to fundraise in memory of your child, but this is by no means obligatory.

 https://www.tinytickers.org/support-info/bereavement/forever-in-our-hearts/

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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
$22,865 raised of $35,000 goal
 
407 donations
$12,135 to go
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