'They just give so much' - Call to wear red for fundraising drive in aid of Leeds' life-saving heart unit

Rachael O'Connell said her son Elijah, three, is “one of the lucky ones” thanks to the expertise of the congenital heart unit team at Leeds Children’s Hospital who operated in June last year to fix a hole in his heart.

Now recovering well at home in Kirkstall, Elijah and his family are planning to show their gratitude by taking part in Wear Red Day - the annual flagship fundraiser of the Children’s Heart Surgery Fund (CHSF) which supports the heart unit at LGI.

Taking place on Friday February 5, Wear Red Day encourages businesses, schools, community groups and individuals across Leeds to wear red and organise simple - and for this year, virtual - events to help raise lifesaving funds.

Rachael said: “The charity [and unit] have existed for a long time but it’s only when something like this happens to you that you become aware of them and what they do.

“I just have the utmost respect. They just give so much - and that’s everyone, the surgeon, the nurses, the play specialists who would check you’re not bored and bring more toys, the people who check what drink you want.

“Everyone just goes out of their way.”

She added: “Seven months post surgery and Elijah is doing really well and is full of energy and very cheeky.”

Little Elijah was just hours old in March 2017 when his newborn checks picked up on a strong heart murmur.

Scans later revealed he had been born with a condition called ventricular septal defect.

Rachael, 34, said receiving that news was like the “world collapsing”.

“I didn’t really hear what they said to me after ‘he has a hole in his heart’, as I tried to make sense of what this meant for Elijah and wondered if he was going to die," she said.

Doctors decided to wait to see if the hole would close by itself or whether surgery would be needed and Elijah had scans every six months to monitor the situation.

“We just lived our lives every six months," said Rachael. "I tried to block it out of my mind. In your head they’re always saying look out for him being lethargic or a blue tinge but there never was.”

Eventually, in January 2020, the surgical team told Rachael and her husband Ben, 36, that the time had come for Elijah to need surgery.

“We had to sign all sorts of papers - two per cent possibility of death, that he might have a stroke, he might need a permanent pacemaker. Ben had to sign the papers in the end.”