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
Boyce in hospital
Boyce in hospital

2016 has been one of the biggest years in Tiny Tickers history. We have developed and grown across all areas of our work - and are very, very grateful to our incredible supporters who have allowed this to happen. 

5,000 babies are born annually with a heart defect, but over 1,000 of them are sent home from UK hospitals every year with an undiagnosed defect. Tiny Tickers exists to improve the early detection and care for these babies – giving them a better start in life.

After finishing our first regional training project for sonographers working across Yorkshire in May 2016, we rolled this out to Wales where we are just wrapping up the final sessions. By the end of 2016, we will have trained over 125 sonographers. Next up in our regional tour of the UK? We hope to announce that very soon...

As well as this, we were delighted to be commissioned by the NHS Fetal Anomoly Screening Programme to help their national roll-out of training for a new view of a baby’s heart that sonographers must now capture as part of the 20-week scan.  This is a significant step forward for all babies with heart conditions, getting us closer to equality of care, and Tiny Tickers’ vision of UK wide detection rates increasing to 75% (vs. current rates of 47%). 

Raising awareness of heart health in babies is a key area of our work. We have two central awareness messages – the first aims to educate parents-to-be about the importance of the 20-week pregnancy scan in detecting heart conditions; and the second teaches health professionals and new parents about the possible signs of undiagnosed heart defects in newborns. 

In July 2016, we sent materials about these campaigns to 10,000 GP surgeries meaning that information about heart conditions in babies can be accessed in waiting rooms nationwide. And, more recently, we launched our Think 20 website, designed to inform (but not scare) expectant parents about the steps they can take to protect their baby’s heart, in pregnancy and beyond.  Launched at the end of September 2016, over 5,000 parents engaged with the campaign in a three-week period.  

There is so much more that we could tell you - check our our website for more info - www.tinytickers.org - but things are only set to get busier in 2017 with ambitions to train sonographers working across 3 more UK regions, the second phase of our Think 20 campaign and the development of our e-training resources for health professionals. 

Rebecca, a heart mum from Scotland knows exactly why our work is so important. Her little boy, Boyce was in early heart failure before his heart condition was detected. Thankfully he is now a happy and healthy 2 year old. Rebecca says,  

"Detection of heart conditions in babies is the difference between life and death. I wish that Boyce’s condition had been picked up earlier but I also know that we were lucky. Not every mother can say the same. 

Tragically, for some parents it will not be their first Christmas with a bouncing baby. Instead, they will face the festive season with the painful memory of a lost child and what could have been.

Christmas without Boyce would be unthinkable. I know that, come Christmas day, it’ll mean the world to us that we are able to celebrate it with each of our three children, especially our little hero who fought to live and won, the biggest gift of all year after year. 

Heart conditions are the most common and deadly birth defect in babies – responsible for 1 in every 13 infant deaths.  Tiny Tickers is a small charity but our work is hugely practical. Your support has allowed us to transform the breadth and scope of our work and we are extremely grateful. Thank you and wishign you a happy and healthy Christmas and 2017. 

Boyce and Rebecca now
Boyce and Rebecca now

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The result of our Yorkshire Training Project
The result of our Yorkshire Training Project

We’ve been very busy at Tiny Tickers HQ over the summer months – finishing off our Yorkshire Training Project and you can see the results below, getting into full speed ahead for training sonographers across Wales, and launching a huge awareness campaign for GP surgeries across the country so that we can ensure more babies with heart conditions are detected as quickly as possible.

One in every 125 babies is born with a heart problem – that’s more than 5,000 newborns each year in the UK. Of these, over 3,000 have a condition serious enough to require surgery before their first birthday. Fewer than half of these heart defects are detected during pregnancy and, in some parts of the UK, detection rates are as low as 1 in 4.

That means over 1,000 newborns leave hospitals in the UK every year with no one realising they have a life-threatening heart condition. 

Two-year-old Martha’s heart defect was detected during mum Gemma’s pregnancy. Gemma says,

“We know that if Martha’s heart problem had not been detected during our 20 week pregnancy scan, she would not be here today.   She came into the world with a great pair of lungs and, to the outside world, looked perfectly healthy. If she’d been born at our local hospital we would have taken her home and she would not have survived.

Prenatal detection saved Martha’s life”

With your support, we can make sure even more babies are identified before it is too late, giving their ‘tiny ticker’ the best start. Thank you so much for your support and we promise that the autumn is going to be just as busy as the summer has been! 

Martha in hospital and now, aged 3.
Martha in hospital and now, aged 3.

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Newborn Harriett
Newborn Harriett

 

Thank you again for all your interest and support of Tiny Tickers. 

It’s really exciting times for our work, especially our training of health professionals to be better able to detect heart problems during pregnancy scans.  We’ve just completed our biggested ever regional training programme - training more than 200 sonographers across Yorkshire and the Humber. We’ve announced a new scheme to offer practical training to every sonographer in Wales; and we’ve been helping FASP (the NHS’s Fetal Anomaly Screening Programme) with training in England. Our future ambitions are just as exciting - after we’ve trained in Wales we want to launch new schemes across the UK. 

This practical training makes a really difference for babies with heart conditions - early detection can save lives and improve outcomes. When we first started our work in 1999, only one in four babies with life-threatening CHD was spotted during pregnancy. Now it’s nearly half. That’s great progress, but we want to help drive the rates much higher.

Carys White, a Radiographer from Kent, gave birth to her first child, Harriett, on 23rd October 2013 after a healthy pregnancy. A murmur was detected at Harriett’s 8 week check but she was already very weak and very ill. Harriett had open heart surgery which was complicated by her weak state, and the fact she was already in early heart failure. Thankfully Harriett made it through. Carys says,

"We have been through a hugely dramatic 2½ years since Harriett was born. Her condition wasnt diagnosed during pregnancy and there is no question in my head that antenatal detection offers the best chance for the baby and family.

The pressure on Sonographers to identify heart and other anomalies, is so great. Tiny Tickers offers support and training to Sonographers, helping to increase their knowledge, understanding and confidence. But Tiny Tickers also offers knowledge to us, as parents, to take an active role in this scan through their Big Tick information. The 20-week scan is exciting – you can take some photos home and perhaps find out the gender of your baby – but ultimately, for the Sonographer in the room with you, it is an in-depth and complex clinical process. Anything that can be done to educate us all about the importance of the 20-week scan is vitally important."

Harriett after surgery
Harriett after surgery
Harriett, age 2
Harriett, age 2

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Tommy
Tommy

We’re here to help babies with heart conditions – giving them a better start in life and the best possible chance for their future. Your support is helping us do that and here are just some of the things that have kept us busy since the new year:

  • We are nearly finished our regional training project for 200 sonographers working across Yorkshire and the Humber. To date, we’ve trained almost 150 and we should be finished by May. Then we will be focusing on rolling this model out to the other regions and nations across the UK so keep your eyes peeled!
  • We’ve launched a set of five videos that will be used by sonographers to help detect heart  defects in unborn babies. The videos each focus on a particular heart condition, and feature  expert interviews and tips; clips from scans; and an animation compare that detect with a normal fetal heart. They are available for health professionals to view free of charge on our website.
  • We have been taking our message to Parliament with Tiny Tickers Chief Excecutive, Jon Arnold, and Project Support Officer, Vicky Woodmansey, taking part in a reception for MPs and Peers  held by the All-Party Parliamentary Group on Heart Disease.
  • And finally we have launched our new Think HEART animation which tells you the five signs to watch for that your baby has a heart condition. You can see the animation (and share it!) on the Tiny Tickers website – http://www.tinytickers.org/support-info/think-heart/

Think HEART is vital if we are to catch the 1,000 babies sent home every year from hospitals in the UK with an undetected heart condition.

Natasha gave birth to her second child, Tommy, in January 2015. Tragically his heart defect was undetected despite Tommy displaying the Think HEART signs and he passed away at 11 days old.

Natasha says “The results of Tommy’s post-mortem showed that he had a form of Transposition of the Large Ductus Arteriosus, a congenital heart defect that can be corrected with surgery. Surgery that has a 98-99% success rate if only his heart condition had been detected.

Tiny Tickers’ Think HEART campaign shows 5 signs that your baby could have a heart condition. With Tommy we could clearly see four of them – the fifth is heart rate which we didn’t know. The signs were there and if we had only known about Think HEART before, we could have saved Tommy’s life.”

Think HEART animation video
Think HEART animation video
Think HEART
Think HEART

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Training sonographers throughout Yorkshire.
Training sonographers throughout Yorkshire.

It’s been a very busy and successful year for Tiny Tickers, and I’d like to say a huge thank you to all our amazing supporters.
 

During 2015 we have trained more sonographers; spread more awareness of heart problems in babies; supported more families going through a diagnosis; and had a big impact lobbying for service improvements. 

These successes are only  the start of our ambitions - you can read about our plans for 2016 on the Tiny Tickers website. It is shaping up to be the busiest and most exciting year in our history.

We are working hard to improve the outcomes for babies born with heart conditions - babies like Millie. 

Millie was born with a major heart defect. Mum Nicola tells how her sonographer having been trained by Tiny Tickers made a difference for Millie...

“Millie was born with a serious heart condition called truncus arteriosus. She had surgery when she was just eight weeks old at the Royal Brompton Hospital.

We are so grateful that Millie’s heart problems were detectedat my 20 week pregnancy scan – thanks to the training the sonographer had received from Tiny Tickers.

We are totally indebted to that sonographer’s skills.

Millie is now four and has just started school - although we know she’ll need further heart operations as she gets older. Millie was given the best possible start in life – had it not been picked up the consequences would have been devastating.

The end of one year is, of course, a time for reflection, and we think also of those who have lost little ones, and of those who are set to fight big battles in 2016. CHD is cruel, and our hearts go out to all those who have suffered loss. Your courage fuels our determination to make a difference.

In 2016, almost 1,000 babies will be sent home from hospitals in the UK with an undetected heart condition. Help us to reach them - make a donation this Christmas and give the ultimate gift. 

We cannot continue our work without your support. Thank you.
 
 

Wishing you a very merry Christmas and a Happy New Year. 


Health and happiness,

Jon Arnold
Tiny Tickers Chief Executive

Millie who had heart surgery at just 8 weeks old
Millie who had heart surgery at just 8 weeks old
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Tiny Tickers

Location: London - United Kingdom
Website:
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Twitter: @tinytickers
Project Leader:
Jon Arnold
London, London United Kingdom
$21,290 raised of $25,000 goal
 
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