Mum on what it's like to raise a child with heart disease

Children’s Heart Surgery Fund is celebrating a decade of its flagship fundraising event Wear Red Day today.

For well over 30 years, CHSF has supported the Leeds Congenital Heart Unit, which treats patients from across Yorkshire, North Lincolnshire and the Humber and is recognised as a “world-class centre of excellence in cardiac care”.

Anna Hunter is asking schools, businesses and individuals from the region to wear red to raise vital funds for the charity.

Anna and her husband, who lives in Idle, welcomed daughter Evelyn into the world knowing she had been diagnosed with heart defects.

The couple received the news at her 20-week scan.

“We were devastated,” Anna said describing her initial reaction.

“We were the last appointment on the day, so we couldn’t speak to a doctor. All they gave us was a booklet about heart conditions. We had no clue or understanding what was happening.

“It took me two years to fall pregnant, so we were overjoyed with that then having that news was a complete bombshell.”

The following 20 weeks were a whirlwind of emotions for the family before finally a happy ending.

“You plan for the worst,” Anna added.

“The booklet suggested that girls with heart problems might not go on to have children and then you think I won’t be grandma. Everything was just on top of us at the time.

“With all the problems, it was a case of if we get a baby by the end of this do we do surgery or not. It was always ‘if baby is ok’ throughout the entire pregnancy.

“She came out screaming and shouting when she was born, which I don’t think was expected. It was absolutely amazing then she was whisk off.

“When they came back saying she was really stable, we both burst into tears and hugged the doctor.”

Unfortunately, little Evelyn was not out of the woods yet.

After birth, she was confirmed to have congenital heart disease - Tricuspid Atresia, Hypoplastic right ventricle, Atrial Septal Defect and pulmonary stenosis.

Evelyn has since had three major heart operations at four weeks old, seven months old and five years old. Her most recent surgery was in February 2020.

Asked if it still affects her now, Anna said: “Before Evelyn’s last operation, she was breathless a lot of the time. She could not walk very far. She couldn’t run or keep up with her friends at school.

“Once Evelyn had the surgery, she was running in the summer. My husband and I brought her to the fields nearby and watched her keep up with her little sister, we were in tears.

“She has been a little trooper throughout. She is now seven.

“She is on blood thinners for the rest of her life. If she remains stable, there shouldn’t be any more surgery.

“Fingers crossed that continues and we don’t say any more intervention.”

An average of 13 babies each day in the UK are diagnosed with a heart defect – with more diagnoses later in life.

Congenital heart disease is the most common birth defect in the UK, affecting around 1 in every 100 babies that are born.

Any child born with a heart defect in Yorkshire, The Humber and North East Lincolnshire will be treated by the Leeds Congenital Heart Unit and supported by CHSF.

Anna added: “CHSF supported Evelyn and her sister with equipment and toys, and provided us with accommodation off the ward, supplies on the ward and guidance and support.

“They are invaluable and our hospital visits would be so much more difficult without them.

“We want people to wear red and support CHSF, so please support Evelyn and all heart warriors and raise awareness.”

Since 2012, the annual Wear Red Day event has brought in over £330,000.

CHSF have given many millions of pounds to the Leeds Congenital Heart Unit thanks to public support since it was devised in 1988.

The money goes towards life-saving equipment, much-needed parent accommodation, essential ward facilities and medical research.

Supporters can register for the event at http://chsf.org.uk/wearred-day and will receive a free online pack which contains ideas and tips for fundraising.

For text donations, message CHSFWRD (plus any Evelyn was born with congenital heart disease in 2014 £amount up to 20) to 70085.