Mission & Need
We exist to help babies with serious heart conditions – giving them a better start in life and the best possible chance for their future.
We want to help drive improvements in survival rates and quality of life for these babies; and we want to help their families cope with what is a very difficult time.
We want to increase early detection rates of cardiac defects – since we started our work in 1999 the national prenatal detection rates in the UK have doubled from 23% to 46%, but we want them to be much, much higher.
We want every baby to be detected as soon as medically possible. For the majority, this means problems being spotted during pregnancy. We don’t want any newborns leaving hospital with an undetected condition that could have been spotted.
We want every baby and their family to receive the same high quality, consistent and compassionate care wherever they are based in the UK. And we want their families to receive the best possible information and support.
Everyone who works and volunteers for Tiny Tickers is dedicated to make this happen. Our passion for our cause is at the heart of everything we do.
Jon Arnold, Tiny Tickers’ Chief Executive: “Our mission is ambitious but achievable. We can help improve detection rates. We can help make sure every baby gets great care. We can help save lives. We can make a massive difference for heart babies and their families – and that drives our work every single day.”
Why we’re needed – Jude and Marshall
The stories of two little boys sum up why we are needed. Marshall and Jude were both born with Transposition of the Great Arteries (TGA).Marshall’s TGA wasn’t spotted during pregnancy. He was born in his local hospital with no one realising his life was in danger. Marshall fell seriously ill soon after birth – changing colour and having breathing difficulties. He was rushed to intensive care but, tragically, passed away after just six hours. His post mortem revealed his serious heart condition.
Jude’s TGA was spotted during pregnancy, by a sonographer at his mum’s 20 week scan. Jude was delivered by planned C-section with a neonatal unit team at the birth. As anticipated, Jude fell seriously ill within hours – at one point his heart stopped but doctors were about to bring him back and stabilise him. He went on to have open heart surgery, which went well.
Jude’s parents are convinced he wouldn’t have made it if his condition hadn’t been picked up before birth, while Marshall’s parents are left with the biggest ‘what if’ question of all.
You can read an interview with Marshall’s parents here and watch this video of Jude’s story.
Why we’re needed – the facts
Early diagnosis and treatment of serious heart problems can save babies’ lives – that is why Tiny Tickers was created, and that is why our work is vital.
One in roughly every 125 babies in the UK has a heart problem – that’s more than 3,000 newborns each year. But fewer than half of those are spotted during pregnancy and, in some parts of the UK, detection rates are as low as 1 in 4.
That means around 1,000 newborns leave hospital every year with no one realising they have a life-threatening heart condition.
Serious heart conditions are the most common and deadly congenital birth defect – responsible for 40% of all deaths from congenital anomalies and 1 in every 13 infant deaths in the UK.
In too many cases, these heart problems aren’t detected until after the baby has tragically passed away – meaning they never had a chance of survival.
In some types of heart defect, intervention is needed within the first few hours of life to perform a procedure to stabilise the baby – without early detection in these cases babies’ lives are at risk almost from the moment they are born.
When detected, we know that many heart conditions can be treated – surgery survival rates are very high and 80% of babies born with a congenital heart defect survive past 16 years of age. The NHS has some of the world’s leading heart surgeons and doctors, and units around the UK are achieving remarkable things every day.
Experts agree on the benefits of early detection, which include:
- The baby’s birth can be managed – often in a specialist centre with the right medical experts at the birth
- The baby will receive treatment as soon as they need it
- If the baby needs open heart surgery, this can be planned for the best possible time – whereas if the baby is already very poorly when detected, surgery survival rates and outcomes may not be as good
- The long-term effects of the early stages of heart failure may be avoided, including brain injury
- Medical emergencies and hospital transfers can be avoided
- Parents can be given support and advice, and prepared for what is to come
Don’t just take our word for it, here are some extracts from a study by Knowles and Hunter called “Screening for Congenital Heart Defects”, published in July 2013 and used by the NHS National Screening Committee as part of a public consultation in 2014:
“Early detection in the fetal or newborn period is essential to provide anticipatory care at delivery or soon after birth, and to prevent death before definitive management can be initiated, or the morbidity consequent on cardiovascular collapse”
“Cardiovascular collapse, characterised by severe hypoxaemia, shock and acidosis, can have significant long-term effects as a consequence of significant multi-organ insults, including hypoxic-ischaemia brian injury”
“Poor clinical status at the time of intervention increases interventional mortality and has an adverse effect on outcome”