Doncaster family's special reason for supporting heart charity

The Children’s Heart Surgery Fund (CHSF) is staging its annual Wear Red Day on Friday, February 5. People all over the county will dress for the occasion and collect money at work, school, or home offices and classrooms .

Among them will be Andrew Kirkby, 33, and his colleagues at Amazon’s Doncaster warehouse.

It will be a particularly poignant weekend for him, as daughter, Ava, turns two on February 7. Had it not been for CHSF and the work it supports at Leeds General Infirmary, that birthday may never have come.

Mum Jessica Barber, 26, who met Andrew when they both worked at Amazon, said: “Without CHSF and the cardiology department at Leeds, I don’t think Ava would be with us today.”

The story began when Jessica was 34 weeks pregnant, and a scan at Doncaster Royal Infirmary revealed that one side of Ava’s heart was unusually large.

Jessica said: “Everything throughout the pregnancy was going really well up until that point. They referred us to Leeds for a more detailed scan a few days later and were given the dreaded news.

“Ava had a condition called pulmonary stenosis, meaning her heart valves were very narrow. We were told to prepare for the worst when she arrived and were under the impression Ava would not survive after being born.”

The news was doubly heart-breaking for the couple, as they had already lost one daughter, Aria, shortly after she was born in 2018.

Two weeks after the fateful scan, Ava was delivered via Caesarean section, weighing seven pounds and two ounces.

Jessica said: “The hardest part of all was not knowing if Ava was going to be alive when she arrived. I couldn’t stop thinking about it.

“It was such a relief to hear her crying. It was the best news I could ever have, and it eased our minds a little bit.”

She added: “I briefly saw Ava for a few moments then she had to be taken away to be monitored and worked on by the cardiac team.

“All I can remember is my parents coming back with photos, telling me she was stable but would need urgent intervention to relieve the pressure on her heart.”

The next day, doctors inserted a balloon into Ava’s heart and expanded it to stretch open the narrow valves.

For the next two weeks, Jessica and Andrew stayed in accommodation built by CHSF to help families stay together in moments of crisis.

Jessica said: “The rooms are only a few minutes’ walk from the ward Ava was on so we were always close by. There were family kitchens for us to have our meals and meet with all the other families going through the same struggles. Without CHSF none of us would be able to get through it.

"It made a huge difference for us as we would either have to spend tons on hotels every night or have to be travel back and forth every day from Doncaster.”

Ava surprised everyone with the speed of her recovery, and the relieved family headed home – but more crushing news was to come.

In October 2019, Jessica and Andrew were told that Ava would need open heart surgery to fix the faulty valve.

That December, they travelled back to Leeds and the CHSF parents’ accommodation. Ava underwent a seven hour operation to have a patch sewn into the faulty valve which would keep it permanently stretched.

Jessica said: “It was also a horrible experience seeing her afterwards with all the tubes and a ventilator. It’s not something a parent should have to see with their baby.”

Thankfully, Ava made another swift recovery and now, just over a year later, is bouncing around like any other toddler at the family’s new home in Intake.

Jessica said: “She will rock her scar forever but she has caught up on all her milestones and is such a happy child. She gives us so much joy and laughter and we’re looking forward to her future.

“All the children who undergo open heart surgery get a Katie bear from CHSF and Ava plays and sleeps with hers to this day.”

She added: “At the time we were all distraught but now we look back and know that without it she would not be with us. This is why we support CHSF any way we can. They do such a great job with every child. I will be forever grateful.”

Since 1988, CHSF has donated more than £8million for equipment, facilities and research at the specialist congenital heart unit in Leeds.

To take part in Wear Red Day and find fundraising ideas, go to www.chsf.org.uk/wear-red-day.

To donate, text CHSFWRD plus any amount up to 20, e.g. CHSFWRD 3, to 70085.