Jo Fradley’s son William died at the age of just 10 weeks old after he was born with hypoplastic left heart syndrome, a condition which affects just one in approximately 4,500 babies.
Jo and husband Gareth, 41, of Bramley, found out the life-limiting diagnosis at the 20 week pregnancy scan but hoped he would be well enough for surgical treatment.
Sadly, William was born three weeks early, weighing just 5lb 5oz, and wasn’t strong enough to have the full series of operations needed.
Jo said staff from Martin House Hospice have been involved since the middle of her pregnancy to today - nearly a year after William sadly died.
“It was a bit crazy being pregnant and someone saying you’ll need a hospice involved for a baby that’s not even been born,” she said. “We were really gutted. But the hospice was brilliant. They came to visit us at home and told us about all the different things they offer.
“Originally we just wanted to use them for respite care because in our minds we were going forward with surgery - we weren’t looking at end of life care.
“And when William was born they visited us in hospital. They came on the ward and came into intensive care as well. They were just always there - working to support us.
“When the doctors unfortunately said William wasn’t going to get any further, we chose to use the hospice for end of life care. They organised it really quickly, they were absolutely fantastic. They made a horrible situation really lovely and really beautiful in some ways.”
Doctors had warned Jo and Gareth that William might only live for a couple of minutes once ventilation at the hospice was removed but he lived for 24 hours - “wide awake and like a normal baby,” said Jo.
“One of the biggest things we wanted for William was to be able to take him outside. In all his two-and-a-half months he had never been outside.
“So we took him outside at the hospice. We even had our dogs there. There was lots of wildlife and we went on the swings and sat outside and had tea and cake. It was a really nice experience for him.”
The hospice continued to look after the family the following week, with Jo and Gareth able to stay in a special room with William, where family and friends could also visit.
The couple are now expecting their second child, a baby girl, any day now and dad Gareth will be juggling fatherhood with supporting his best friend Lee Hebden, 41, who has set himself 10 challenges - one for each week of William’s life - in aid of Martin House Hospice.
Having completed dry January, one-hour non-stop trampolining, 127-mile bike ride along the Leeds-Liverpool canal, an eight-summit Lake District walk and the Great North Swim, Lee is set to do this weekend’s Jane Tomlinson’s Run for All Leeds 10k - possibly with Gareth.
Lee said: “I just had one of those mad ideas like I do. I wanted to do something in William’s memory and that’s what I came up with.
“I’m doing the 10 and the idea was to have friends and family to join me on different events. But Gareth has so far been involved in pretty much everything I have done.”
Lee, who volunteers Bradford Olympian Trampoline Club, added: “Martin House is just fantastic. It’s not just the care for the kids - it’s also the after-care. They have been supportive to Gareth and Jo since William passed away.”
For more information on Lee’s challenge, or to sponsor him, visit https://mydonate.bt.com/fundraisers/leehebden.