Help babies with serious heart conditions

by Tiny Tickers Vetted since 2012 Site Visit Verified
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

YOUR SUPPORT:

A baby is born with a serious heart condition every two hours and despite congenital heart disease being one of the biggest killers of infants in the UK, only around half of heart defects are picked up during prenatal scanning. It is absolutely vital that we provide a safety net for the 1,000 babies each year that leave hospital with their heart defect undetected.We want to increase early detection rates of cardiac conditions thus improving a baby’s chances of survival and long-term quality of life. Tiny Tickers is a small charity but our work is hugely practical and effective and we would like to thank you for continuing to support our work and in turn giving heart babies a better start in life.


The money you have donated has been used to support our vital programmes, working to improve detection rates, care and treatment of congenital heart defects in babies. Although great strides have been made in detecting heart problems, the national detection rate still only sits at around 50%, so there is far more that needs to be done. Sadly, heart defects are still one of the biggest killers in babies under 1, being responsible for 1 in 13 infant deaths. We are determined to improve this statistic.

Your support will let us continue helping babies like Angus to have a better start in life.

Thank you.

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We are delighted to introduce our Annual Report for the last financial year. We've had another successul year of helping babies with CHD, their families, and the dedicated health professionals who look after them and we hope you enjoy reading about our vital life-saving work.

Your donation will be used to support this vital work, improving antenatal detection rates, care and treatment of congenital heart defects in babies. Although great strides have been made in detecting heart problems, the national detection rate still only sits at 47%, so there is far more that needs to be done. Sadly, heart defects are still one of the biggest killers in babies under 1, being responsible for 1 in 13 infant deaths. We are determined to improve this statistic.

We look forward to keeping you updated throughout the coming year, as to how your support is helping give tiny hearts a better start.

Many thanks to all who have supported our work. We can only do what we do, because you care.


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We are thrilled to announce that our small charity has just reached another huge milestone. We have visited our 100th NHS hospital since 2016, to deliver specialist cardiac training, which helps sonographers detect heart defects in unborn babies.

From Telford to Torbay and Grimsby to Guernsey, we have trained sonographers at hospitals all over the UK. One third of serious heart defects go undetected before birth and it’s vital that we train and educate as many sonographers as possible. Early detection gives babies with congenital heart disease a better chance of survival and prepares their family for what lies ahead.

Our CEO, Jon Arnold, says, ‘We’re delighted to have reached the milestone of training in 100 NHS hospitals since the beginning of 2016. That work has seen us deliver expert cardiac screening training to more than 1,000 sonographers spread across England, Scotland, Wales and Northern Ireland – training that has benefited babies with congenital heart disease. We’re dedicated to helping sonographers do the very difficult job of checking for heart defects, and we’re looking forward to continuing this vital work in dozens more hospitals throughout the UK in the coming months and years.’

The 100th hospital to take part in our training was the Royal Devon and Exeter Hospital. This forms part of our South West training project, where we have, so far, offered free training to sonographers at nine hospitals throughout the region.

Helen Liversedge, Associate Specialist Obstetric and Gynaecological Ultrasound at the hospital says, ‘This week, we are delighted to welcome Tiny Tickers to our Centre for Women’s Health at the Royal Devon and Exeter Hospital. Heart defects are the most common congenital birth problem and diagnosis before birth (usually at the 18-20+6 week anomaly scan) is important for parents and professionals to discuss and plan treatment options, sometimes resulting in a different place of delivery with an expert cardiac surgery team. National detection rates have been improving however it still remains difficult to detect some heart anomalies. At the Royal Devon and Exeter we have always tried to improve our standards and this involves continued training. To have additional expertise and training sessions with Tiny Tickers is an exciting opportunity to help continue enhance our detection rates and improve care and support for our parents and babies.’

Thanks to your support we are able to continue with our sonographer training programme throughout the UK. Thank you.

Matilda
Matilda

Your support helps us to ensure every baby with a serious heart condition is detected and treated at the first opportunity, and their family gets the support they need. Early detection means babies get the treatment they need from the first opportunity. This can save lives, improve surgery survival rates and lead to a better long-term quality of life. 

"Tiny Tickers and the values and mission statements of the charity resonate heavily with me. If Matilda’s SVT hadn’t been accidentally picked up, things could have worked out very differently. Training sonographers to pick up heart defects in unborn babies is so important to saving lives. Also, having access to an organisation that supports families through this difficult time is crucial to being prepared for what is to come."

 

Matilda has Supraventricular Tachycardia, which was picked up by chance at the end of her mum, Crissy’s, pregnancy. Here, Crissy shares their emotional story:

‘Late on in my pregnancy with my second child, Matilda,  she was identified as being a breach baby. We decided to opt to have an ECV to encourage her to turn the right way up and increase the odds of a natural and safe labour.

At 36 weeks pregnant we went to hospital for the procedure and during the assessment the nurses detected that Matilda had an extremely fast heartbeat at over 240 beats per minute (the norm is 120-160 bpm). We were referred to Evelina London and were placed under the care of the Professor of Fetal & Paediatric Cardiology.

He diagnosed Matilda with a number of heart conditions including: atrial fibrillation, multiple blocked atrial ectopic beats, coupled ventricular beats (bigeminal rhythm) and intermittent supraventricular tachycardia (SVT).

The safest option involved intrauterine therapy to convert the fetus to sinus rhythm prior to delivery, so the birth could be with a controlled arrhythmia. Just a week after being on medication Matilda’s heart became controlled.

Matilda was delivered safely by C-section a week before Christmas and was kept in intensive care for one week to stabilise her condition. She still had her heart conditions so was put on medication to manage these, bideing time until she was old enough for an operation.

Matilda didn’t have the best of luck in the first year of her life as she also had a reaction to her first set of jabs and a milk allergy, which caused issues with reflux. As a family, we spent a lot of time in hospital.

 For the first three years of her life Matilda’s SVT was monitored regularly at hospital and she frequently wore ECGs to ensure that her heart was still behaving. ECGS are not great on tiny babies and even worse on crawling toddlers!

At the start of this year we trialled (for the second time as the first time was unsuccessful) taking her off her medication to see if her SVT had naturally rectified itself. Luckily (touch wood) the SVT seems to have gone into remission and, for the first time in her life, she isn’t on medication. We still have regular ECGs and check-ups at the hospital but at this moment Matilda is a fit, giggly and healthy toddler."

Thank you from Crissy and Matilda for your support.

Jon Arnold, Chief Executive
Jon Arnold, Chief Executive

We've achieved a major milestone in our mission to detect heart defects in babies BEFORE they are born. On 5th July in the Royal United Hospital Bath, we trained our 1000th sonographer since 2016, to spot heart defects whilst carrying out routine 20 week pregnancy scans.

A baby is born with a serious heart condition every two hours in the UK and congenital heart disease (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.

Natasha Pye, a parent whose son, Tommy, tragically passed away at 11 days old said: “We know that Tommy had a congenital heart defect that could potentially have been corrected with surgery. If only his condition had been detected, he might be alive today.” 

Jennie, a heart parent said: “We could not have asked for a better experience mainly because the sonographer had been through the Tiny Tickers training so understood the impact of early diagnosis of heart defects and the worries of parents. She was professional and thorough. Thank you Tiny Tickers, you are making a huge difference.”

Tiny Tickers is the sole provider of hands-on, hospital-based cardiac screening training for sonographers throughout the UK. The specialist fetal cardiac training enhances the confidence and skills sonographers need to detect heart defects during pregnancy scans. 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.

Jon Arnold, CEO and Heart parent said: We are thrilled to reach this milestone. As we’ve travelled the UK training in hospitals, we’ve been impressed with the professionalism and dedication of the sonographers we’ve met. Early detection of CHD can hep 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. Thank you to all our supporters.”

Our celebration cake!
Our celebration cake!
Our wonderful sonographers
Our wonderful sonographers

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Organization Information

Tiny Tickers

Location: London - United Kingdom
Website:
Project Leader:
Jon Arnold
London, London United Kingdom
$11,571 raised of $25,000 goal
 
193 donations
$13,429 to go
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