Help babies with serious heart conditions

Training sonographers to have the skills and confidence to detect heart defects at pregnancy scans is a core part of our work.

Why? Because we want babies with serious heart conditions to get the treatment they need as early as possible. We want them to get the right care at the right time. We want them to have the best chance of survival and a good quality of life.

By spotting a baby's heart defect before they are born, they will receive the care they need from that point onwards, and their family can prepare for the journey ahead. 53.5% of all congenital heart defects are now detected prenatally in the UK - this is more than double the detection rate than when Tiny Tickers started training in 1999.

However, there is still much to be done. We are working hard, alongside our incredible NHS colleagues, to improve outcomes for heart babies.

We won't stop fighting for tiny hearts.

With warmest wishes,
Anne Rhodes,
Deputy CEO and Head of Health Professional Services

Fetal cardiac study day 

Last month, we held a fetal cardiac study day for sonographers in collaboration with the North West CHD network, Alder Hey Children's Hospital Trust and Liverpool Women's Hospital. The event was sponsored by GE Healthcare and was free for the sonographers who attended.

The morning session consisted of lectures and during the afternoon, sonographers had hands-on training, facilitated by the cardiac team.

Watch the video here to join our Project Support Officer, Abby, on the day! Join her in the lectures and see our trainers at work as they deliver the hands-on-training.

Skye's Story 

"If Skye’s condition was detected prenatally – or even a few weeks/months after her birth – her story would have been a whole lot different." 

Skye’s very serious heart defects went undiagnosed for a terrifying 19 months.

Her mums, Clara and Susie, voiced their concerns to health professionals many times. "Skye’s first few months at home were HARD. She was an unhappy little baby, with what we were told was ‘colic.’ She would cry and scream through most evenings. She was always very small and really struggled to gain weight."

Valentine's Day is a special day for Skye's family, because it's the anniversary of the day Skye's heart murmur was detected, which led to eventual diagnosis and surgery.

Thankfully, Skye is now thriving. Clara and Susie have shared their story to help ensure no other parents have to go through what they did.

Read Skye's's story here. The story discusses surgery and contains post-surgery images.

Links:

• Find out more about our work and impact

"Brodie loves football and Transformers. He started school in September, which we didn't think we'd see." - Ian, Brodie's dad.

Brodie was born with congenitally corrected transposition of the great arteries (CCTGA), which was detected antenatally. After having surgery at 15 months old, he is now four years old and living a full life.

His dad, Ian, recently shared their story with us in order to spread awareness of congenital heart disease (CHD) and give hope to others at the beginning of their journeys.

Brodie was born on the 8th May 2019. We knew of his congenital heart defect before he was born, as we found out at his 20-week scan on Christmas Eve 2018 and were referred to GOSH before he was born. 

Brodie was pa banded at three weeks of age, as he went into heart failure. The options for him after that were single ventricle or bi-ventricular repair, as they weren’t sure about the size of one of his ventricles.

Brodie had the double switch on the 4th August 2020 when he was 15 months old. He was discharged after 11 days. He now has yearly check-ups and, ultimately, we will just continue like this.

Brodie started school in September, which we didn’t think we’d see.

He’s a well travelled boy, having been to Edinburgh (where I ran a marathon for Tiny Tickers) Dublin, New York and Florida (following me around running). He loves bin lorries and putting out the bins – he was even featured in a local council video! Brodie also loves his football (he trains every Sunday) and Transformers. 

How Tiny Tickers helps children like Brodie

• Funding potentially life-saving equipment. Not every heart condition will or can be diagnosed during pregnancy. If newborn babies are given a pulse oximetry test soon after birth, heart defects can be identified. We believe every baby should have the test that could help save their life, so we place pulse oximetry machines in maternity units across the UK.
• Sonographer training. Tiny Tickers is the sole provider of hands-on, hospital based cardiac screening training for sonographers in the UK. This enhances the confidence and skills sonographers need to detect heart defects during pregnancy scans.
• Spreading awareness. Our awareness campaigns inform and empower parents-to-be about their 20-week scan and raise awareness of the five potential signs of a heart defect in newborns.
• Family support. Finding out your baby has a serious heart condition can be a truly devastating experience. We support families through diagnosis and their child’s treatment, with reliable information, signposting and peer support.--

Links:

• More about CCTGA