Mum Beckie Gordon was just 21 weeks pregnant she was told that her child would not survive labour, due to a concerning condition with his heart.
"During the scan they said there was something wrong with the babies heart and he wouldn't survive the birth. After consulting another doctor who specialised in the area he said that he could survive but only 70% chance of survival."
The Skewen couple were transferred to Bristol's St Michael's Hospital for the birth of little Ollie. Staff at the hospital were better equipped to deal with the complications associated with his condition, Beckie said.
Read more: 'Our baby daughter would be alive today if we hadn't been failed by maternity services'
When Ollie was born doctors whisked him away to receive emergency treatment, he was just a week old when he had his first open heart surgery. He was diagnosed with hypoplastic left heart syndrome, which means only half of his heart was working correctly.
The 37-year-old mum said: "After the first operation when he was seven days old, his chest was left open for days and they told us he wouldn't survive the weekend."
Ollie underwent the Norwood procedure which is an open-heart operation for babies born with hypoplastic left heart syndrome. The procedure aims to let the right ventricle of the heart pump blood to the rest of the body while it would normally only pump blood to the lungs.
Babies who are born with the same condition as Ollie have very small left ventricles and aortas which are too small to pump blood to the rest of the body, so the procedure aims to help this until they are old enough to receive treatment that will help the issue long term. You can get the latest stories straight to your inbox by subscribing to our newsletter here.
The second of Ollie's course of three surgeries came when he was just six months old with the Glenn procedure. This type of open-heart procedure aims to send blood from the upper body directly to the lungs so the single ventricle doesn't have to work as hard, according to the NHS.
After the two procedures Ollie remained a "happy, cheeky and cwtchy little boy" and most importantly of all stable. That was until January of this year when Ollie went into heart failure. Ollie was running around and keeping his parents and four siblings on their toes until a virus and Covid took its toll on the little boy. Dad Stephen Mahoney said "his nails turned blue."
"I had to tell Stephen over the phone that Ollie had gone into heart failure, there was only one parent allowed to stay with him," Beckie said.
Ollie spent two months in hospital, with much of it spent in the intensive care unit receiving oxygen therapy. The family were told that only 30% of Ollie's heart was working, and that was at its best after receiving treatment to improve his worsening condition.
"He is due a third operation but they won't do it because they said that he won't survive it now with his heart failing, and only 30% of his heart working," said Beckie.
But at just 18 months old he is now under the palliative care team until he can receive the lifesaving heart transplant that he so desperately needs, which may take up to 18 months.
Beckie and Stephen said: "The medication is helping to pump the blood through but there may come a time when it stops and he could pass.
"Ollie was number seven on the waiting list for a heart transplant but now that he's no longer on oxygen there are other children that would need it first. They've asked us if his heart stops what they want us to do."
Ollie's parents are now fundraising through 'All for Ollie' to raise money for the four charities who have supported them throughout their journey so far including, Noah's Ark Children's Hospital, Great Ormond Street Hospital, The Ronald McDonald House Charity, and Wallace and Gromit Children's Charity.
Through donations, sponsored walks and a charity event organised by Pro Wrestling Karnage, they hope to raise money for the charities that have helped Ollie and the family through difficult times. You can donate to their fundraiser here.
