When Chanel Murrish was born, she became the youngest person in the world to have heart surgery.
The moment the tiny baby was delivered via c-section, she was whisked to an adjoining theatre, where doctors rushed to save her life.
At the time, she was given just a 5% chance of survival, and since then, Chanel, now nine, has endured four open heart surgeries, a stroke and a cardiac arrest.
But the little girl has fight to live life to the fullest and now, she’s finally realised a dream her family thought she may never achieve: a trip to Disneyworld in Florida.
Chanel’s mum, Fay, says: ‘Chanel went down for her fourth open heart surgery in 2017 asking if she could go to “Mickey Mouse’s house” when she was better.
‘After her recovery, we started to plan her dream trip – but then Covid got in the way. But finally, it’s happened.’
Fay was 20 weeks pregnant when she and husband, Micheal, were told that their third child had a rare and incurable heart condition, called hypoplastic left heart syndrome (HLHS).
HLHS means that the left ventricle of the heart does not develop properly so is much smaller than usual. This means that the heart is unable to pump blood around the body effectively.
Mum-of-three Fay says: ‘We were given three options. The first was termination of pregnancy. The second was to go ahead with pregnancy and a natural labour, and let her pass away in our arms without intervention.
‘The third was to proceed with the pregnancy, a caesarean labour and complex surgical procedures, knowing the high fatality risk.’
‘Although we considered every option – and know different options are right for different people – we knew we would be going with the third. No matter what the facts were, we wanted everyone to fight for her and do all they could.’
As Fay and husband Micheal struggled to process the news, a 30 week scan revealed yet more devastating news – their baby the rarest form of the condition, as well as extra complications which made her case even more serious. While most patients have open heart surgery at a few days old, Chanel would need an operation immediately.
Fay says: ‘They told us she needed to be born by caesarean in adjoining theatres for immediate surgery.
‘She would be born in a cardiac theatre, and would be only one of the few babies ever to have surgery straight after birth.
‘We were told to expect that even if she survived all the surgeries, she would be very sick, in hospital a long time, and they thought it unlikely she would see her second birthday.’
When it was time to give birth, a huge team of doctors were waiting.
‘It was surreal,’ says Fay. ‘It all felt more like a film you would watch on TV.’
Chanel was born at 9:44am on Monday 24th February 2014. She also has cerebral palsy and epilepsy.
Fay says: ‘They quickly lifted her up for me to get a glimpse of her. She was beautiful and so tiny. She looked so much like her brothers, and all I wanted was to grab hold of her and never let her go.
‘But within seconds, Chanel began to gasp for air. She turned a shade of blue and became very limp and lifeless. Not even having time to weigh her, her surgeon shouted: “We haven’t got time, go go go!”
‘The room became very quiet and very empty. Without being able to even hold my baby, she was gone.’
Chanel was taken into the adjoining theatre for immediate open-heart surgery – which made her a Guinness World Record holder for being the youngest patient ever to have open heart surgery.
All Fay and Micheal could do was wait. ‘It was agonising, so I begged my anesthetist to go into Chanel’s theatre room and find out how things were going.
‘She brought me back a photo and that’s when I knew, our princess had made it! Her surgery had gone as well as it could. I was told they would push her past me in recovery on her way to intensive care so we could see her.
‘As much as you try and prepare yourself to see your child critically ill, it’s impossible.
‘The next day, I got to hold her for the first time to help bond through a jungle of wires and tubes. Chanel got to meet her two big brothers too, but all we could do was sit by her side, hold her hand, talk to her and pray for improvement.’
Chanel couldn’t breathe for herself and was stuck on life support. At seven days old, she had yet another surgery.
‘More than seven hours later we finally got the call to say her surgery had gone well,’ says Fay. ‘But she was very sick still and on a lot more medication. She was ice cold to touch, and her chest was left open. We could see her tiny heart beating in front of our eyes.’
Fay and Micheal says they ‘learnt to take each day at a time’, juggling hospital and home life. In total, she was in hospital for three months, during which time she had eight trips to theatre.
Since then, Chanel had a third open heart surgery in August 2014, and a fourth in August 2017. She now has six-monthly check-ups.
‘We still have a community nurse, dietician, speech and language, gastro team and physio to help with all her other needs,’ says Fay.
‘When I look back at everything she’s been through – and continues to go through, it’s beyond incredible to see how far she’s come.’
Life can be tough for Chanel, but thanks to the advances in British Heart Foundation funded research, and the care she receives she reached milestones that at once seemed unlikely. She is now nine years old, she can walk, and she started mainstream school in 2018.
And, at the end of last year, she finally made it to Disneyland.
The trip took on an extra poignancy for the family, as Fay says that it’s Chanel’s love of all things Disney that has kept her going through her constant health battles and stays in hospital.
‘Chanel’s favourite moments was definitely meeting the gang from Disney Junior. She is also a big thrill seeker, so she loved all of the rides too! We went on the Seven Dwarfs Mine Train over and over again with her.’
Fay and Micheal are now backing the British Heart Foundation’s latest This is Science fundraising campaign – shining a spotlight on how the charity powers pioneering research, enabling families like theirs to make precious memories.
Fay says: ‘We are constantly in a state of worry about what the future will bring but we are so, so, proud of what Chanel’s achieved.
‘She inspires everyone with her courage, strength, and determination.’
Find out more about the BHF’s This Is Science campaign and the charity’s role in funding lifesaving research by visiting their website.
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