Help babies with serious heart conditions

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.

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.