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
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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At Tiny Tickers our message for parents is always ‘you are not alone’. The ability to speak to others going through, or who have been through, a similar situation is often a very valuable source of support for a lot of parents of babies and children with congenital heart disease.

We have been delighted to launch our new free, virtual peer support sessions, made possible by funding from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund, and the generous donations from you, our supporters.

The last year has been difficult for many different reasons, but particularly for those families who have been newly diagnosed with congenital heart disease, or those who are navigating their CHD journey when the normal support routes have not been available. Diagnosis is an exceptionally difficult time, and often families don’t know where to turn for support and practical advice, let alone when the only support available is at arms-length. We have set up  these sessions to support as many parents & carers, to offer help and advice to any parents that would like to meet and share their experiences. For parents of babies with serious heart conditions, the ability to talk with those going through similar experiences can be a lifeline.

“Taking part in the parent-to-be virtual support group gave us huge levels of support before our baby was born. After our diagnosis, it provided a platform for us to meet other parents experiencing the same worries and emotions, reminding us we were not alone. We are all still in regular contact and continue to support each other through our children’s surgery and aftercare.” Emma, heart parent

Our virtual peer support groups provide a safe and non-judgemental space for heart parents to connect and share their journeys together. We are delighted that with the support of our funders, and generosity of our supporters, we are able to support more families going through the unthinkable.

--
Katie Lawson
Head of Fundraising & Communications
 
Tiny Tickers
katie@tinytickers.org
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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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Organization Information

Tiny Tickers

Location: London - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @tinytickers
Project Leader:
Jon Arnold
London, London United Kingdom
$21,136 raised of $25,000 goal
 
377 donations
$3,864 to go
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