New charity role for mum whose baby had life-saving heart surgery in Leeds

Sam Robinson is hoping to turn her harrowing experience into something positive as she becomes deputy chair of trustees at the Children's Heart Surgery Fund, which supports the congenital heart unit at Leeds General Infirmary.

Sam's son Zane, now nine, was just two weeks old when he had ten hours of surgery at the unit to correct a life-threatening defect called transposition of the great arteries.

Sam, 42, of Alwoodley, told the YEP: "We first came across the heart surgery fund when I met someone on the ward who gave me a certificate and a teddy and said if I needed anything to keep in touch.

"Four years after that I was reading a newsletter and saw they needed a parent trustee and I thought I could do that. I applied and got the job."

Now, five years on, she has been promoted to deputy chairwoman and will juggle the role with her day-to-day job as head of operations at NHS Digital as well as being a busy mum to Zane, Lola, 11 and Gabriel, 5.

She will support new chairman and fellow 'heart parent' Paul Goodwin, 52 - the first time the charity's trustees' board has been headed by parents trustees in the top two roles.

Paul's daughter Martha, now five, was diagnosed with the same condition as Zane and had open heart surgery at the unit when she was just six days old. Sam said: "I think it's really good that Paul and I are both parents. When you're making decisions about funding - it might be new pieces of equipment, or refurbishments - you can bring a different perspective to it, with the experience we've had and how much that means to families."

Zane was just over a week old when a routine postnatal appointment turned the family's world upside down.

The midwife spotted that Zane was looking an unhealthy colour and told Sam and husband Richard, 43, to hurry to Leeds General Infirmary while she phoned ahead.

Medics quickly diagnosed the dangerous heart defect and warned his horrified parents he was already entering multi-organ failure.

After stabilising little Zane, he was operated on just days later - on Valentine's Day, 2011.

Sam said: "We're so lucky we had a really canny midwife who spotted that something wasn't quite right. Just amazing timing as he was pretty poorly at that point. It just sends shivers down my spine."

Zane spent two days in intensive care, two days in high dependency and one day on the ward before he was allowed home - much to the amazement of his parents.

"That was really quite mind-blowing, to think that he had had major surgery. His chest had been left open for until the swelling on his heart had gone down. He'd only had it re-sewn for two days.

"What they can do and what small children can bounce back from is pretty extraordinary."

Each year on Valentine's Day the family now hold an annual celebration to mark Zane's 'heart day'.

The Talbot Primary School pupil will need check ups for the rest of his life but hopefully no further surgery.

Proud mum Sam said: "He's more than fine. He's devastatingly handsome, he loves football, plays for the local team, he's energetic, funny and just a fantastic little boy.

"It's extraordinary to think about. A different decision on that day, a different appointment, a different midwife..."

Now Sam is looking forward to supporting other families through the vital work of the heart surgery fund - which this year is aiming to raise £1m in donations, a quest the Yorkshire Evening Post has pledged to support this year though our Have a Heart appeal.She will bring her expertise from years of working in the NHS, having also previously worked for Leeds Teaching Hospitals.

"I understand the mechanism and funding of hospitals and I understand the viewpoint of parents and families and what they go through."

She added: "I am able to bring a balanced view about what charity should be funding and what the NHS should be funding because those lines can get blurred."

To donate to the Children's Heart Surgery Fund and help in its bid to raise £1m this year:

Visit chsf.org.uk/donate to give a one-off donation or to set up a regular, direct debit donation.

Or pay cheques to: Children’s Heart Surgery Fund at 3 Oxford Place, Leeds, LS1 3AX