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Help babies with serious heart conditions

by Tiny Tickers
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

Tiny Tickers is a small charity but our work is hugely practical and effective and we hope you enjoy reading about how your support has helped give heart babies a better start in life.

What your support has helped us to do:

- Fund vital life-saving equipment - not every CHD condition will or can be diagnosed. By placing pulse oximetry machines in maternity wards we can provide another method of detection. Placing pulse oximetry machines in hospitals ensures any heart defects are picked up early, and that the baby and family, have access to the life-saving treatment they need before that baby experiences heart failure.

These machines can indicate possible heart or respiratory issues quickly and effectively by measuring the amount of oxygen in the blood. Low oxygen levels can be a key sign that a baby could have a critical heart defect. This is a very simple test that could help identify cases quickly and effectively, leading to immediate referral if required. Not every baby will be born visibly displaying signs and symptoms and without this machine serious defects could go undetected.  

- Sonographer training - 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. Training sonographers how to better detect heart conditions at 20-week pregnancy scans is Tiny Tickers’ core activity. Tiny Tickers aims to increase early detection rates of cardiac defects – since we were founded nearly 20 years ago, the national prenatal detection rates in the UK have doubled from 23% to around 50%. Since 2016 we have trained over 1193 sonographers in over 108 hospitals in the UK.

- Improving standards - ensuring the voice of parents and the needs of babies are heard by those setting standards in CHD services. We are patient and public representatives on; NHS England’s Clinical Reference Group for CHD, the NHS England National Review of CHD services’ Programme Board, and the advisory panel for the National Congenital Anomalies and Rare Diseases Register.

- Raising awareness - our awareness campaign ‘Think 20’ informs and empowers parents-to-be about their 20 week scan; while ‘Think HEART’ raises awareness of the five potential signs of undiagnosed CHD; knowing these five signs could save their baby’s life. As a result, mums-to-be are more informed about their pregnancy scans; health professionals and new parents know the signs of undetected heart conditions; and the general public is more aware of just how common and serious heart defects can be.

- Family information - It is truly devastating for new parents to find out that their baby has heart problems, and the volume of medical information can feel overwhelming. We recognise the need to complement medical material with more practical information and peer-to-peer advice. Diagnosis is an exceptionally difficult time, and often families don’t know where to turn for support and practical advice. We ensure that our suite of materials gives parents the information they need to navigate this challenging time. We have produced videos and new diagnosis booklets that help support parents and families dealing with a diagnosis. We also run a private online forum for heart families.

Tiny Tickers is the only UK charity working to improve prenatal detection rates of heart conditions in babies and our work has a direct and significant impact on national detection rates of heart defects. Our work delivers real life-saving results to heart babies, their families, and the health professionals that look after them. We’ve continued to ensure the voice of parents is heard, and their views valued, by those who set standards in CHD services. And we continue to be a source of comfort and support to all those heart families facing a new diagnosis or an uncertain future. We are a small charity, but with the help of all of our supporters and the heart community, we can continue to deliver a huge impact for all tiny hearts. So thank you. We couldn't do what we do, without you.

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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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Attachments:

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.

 

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Organization Information

Tiny Tickers

Location: London - United Kingdom
Website:
Project Leader:
Jon Arnold
London, London United Kingdom
$13,263 raised of $25,000 goal
 
212 donations
$11,737 to go
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