Mabel’s Story
written by mum Jess
Meredith and Mabel were born 2nd June, but Mabel’s CHD diagnosis wasn’t discovered until 24 hours after birth.
She had severe aortic stenosis and coarctation of the aorta. Despite being Mabel’s identical twin, her sister Meredith did not suffer the same condition.
Mabel travelled to Leeds and had the catheter balloon surgery three days later which was thought to be successful.
Weeks later, at a review appointment, we were told the surgery effectively failed and due to the narrowing of the valve and blood struggling to pass through the valve and the artery, her heart muscles had deteriorated and were seriously weak.
We went back to Leeds and Mabel underwent the Ross Procedure at 4 weeks old weighing only 2.5kg – the same as her birth weight.
They replaced her aortic valve with her pulmonary valve, and replaced the pulmonary vale with a bovine jugular vein. The artery was made larger using human donor tissue.
We were told the op should have taken approx. 6-8 hours, but she was in surgery for 13 hours, having bled out for the last four.
Miraculously her heart and lungs worked on their own after the surgery. She did go into kidney failure and suffered a bleed on the brain. We were told the effects of the bleed would not be known until she was older, and we needed to keep an eye on her developmental progress.
Since then, she had four-weekly reviews which went to three-monthly and at the last scan in August 2022, they told us that she could go down to yearly reviews.
The surgeons cannot believe the recovery of Mabel. They expected severe scarring from the stress her heart was under during the first four weeks of life but state that despite the small bit of scarring, the heart is working better than they ever could have expected.
“Just having someone with us, making sure we had everything we needed was more than we ever expected or imagined.”
The hospital suggested yearly reviews but (nervously!) I requested an earlier appointment rather than waiting a year and Mabel’s next scan will be in June, around her second Birthday.
Mabel is slightly smaller than Meredith and around two weeks behind developmentally – we put this down simply to time under sedation. Who knows?
She is smashing each and every milestone, and more. She is a daredevil, crazy, hilarious, entertaining and a total rogue.
You always think stories like this happen to someone else until it happens to you. I had no idea how common heart defects in children are.
Before Mabel was even taken to Leeds Children’s Heart Surgery Fund were working behind the scenes to secure me, Gareth and Meredith accommodation at Eckersley House in the Hospital grounds, free of charge.
Someone from the charity would drop in on us regularly at the hospital providing emotional and financial support, including: accommodation, petrol money, food vouchers for the nearest supermarket to the hospital, offering us counselling.
Just having someone there by Mabel’s hospital bed with us, making sure we had everything we needed was more than we ever expected or imagined.
“I know that CHSF will be there with us every step of the way”
During the worse moments of our lives, thanks to the donations given to CHSF, the Charity were able to take away the stress, worry and logistics of finding somewhere to stay and the general expense that goes with it.
This allowed us to focus solely on Mabel and her recovery.
CHSF also provided Mabel with a Katie Bear teddy, a medal and a Certificate that included her surgeon’s name. These thoughtful and generous treasures will help us explain to Mabel her incredible story for years to come.
We are told Mabel will need the same Ross Procedure again maybe 2 or 3 times by the time she reaches adulthood, and I know that CHSF will be there with us every step of the way on each occasion.
A simple “thank you” in return for all that Children’s Heart Surgery Fund has done for us, and so many other families, seems so insignificant.
To say thank you for the support his family received, Mabel’s dad Gareth took on the formidable Three Peaks Challenge last year with a group of friends to raise funds for CHSF.
Feeing inspired? Head over to our Events page which is full of ideas to generate life-saving funds for the Leeds Congenital Heart Unit all year round! Got an idea already? Let us know using our fundraising registration form.
Jess Family Law Chosen Charity
Heart mum Jess runs Jess Family Law and is a self-employed Family Law Consultant.
We are so grateful to Jess for picking Children’s Heart Surgery Fund as the chosen charity for Jess Family Law.
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