A little boy who was given a slim chance of survival after being born with "half a heart" has defied doctors' expectations by reaching his school years.
Oakley Williams, who was delivered six weeks early via c-section weighing just 3lb 3oz, was immediately taken to intensive care when his body came out "really blue".
After serious problems were identified with the newborn's breathing, the decision was made to transfer him from Prince Charles Hospital in Merthyr Tydil to the University Hospital of Wales (UHW) in Cardiff for specialist care.
Read more: 'I had two heart attacks but didn't seek medical help as I didn't know the symptoms'
"After I had my c-section he was taken straight off me. I didn't see him for five days as we were in different hospitals. It was absolutely petrifying," recalled his mum, Gemma James.
"I was put on a ward with other mothers and their newborn babies which was really awful. I didn't know what was happening with my son. My partner, David Williams, was going back and forth between hospitals to give me updates on how he was doing."
Gemma, from Abertysswg, Caerphilly, said no issues were picked up at her 20-week pregnancy scan other than her low amniotic fluid levels. It meant the significant problems with Oakley came as a big shock when he was born on May 5, 2016.
Oakley was diagnosed with hypoplastic right heart syndrome, a congenital heart defect in which the right atrium and right ventricle are underdeveloped. The defect causes inadequate blood flow to the lungs which is why he was blue on delivery.
"Because he was so little when he was born he didn't weigh enough to have an operation to correct the defect," Gemma explained. "We basically lived in the Heath Hospital [UHW] for three months to allow him to gain weight. We just had to feed him and feed him.
"He was ventilated and on life support the whole time. Some days we'd wake up and he'd have a good day, and others we'd fear we'd lose him. They told my partner when Oakley was first born that he may not last the week."
Gemma, a mum-of-two, said one of the most difficult parts of the ordeal was trying to find childcare for her eldest son Dayton, who was three at the time and without his parents for weeks on end.
After undergoing a surgical procedure known as a BT shunt - which increases blood flow to the lungs - Oakley continued to gain weight. He was then transferred from UHW to Birmingham so he could undergo open heart surgery on St David's Day 2017.
"He was in theatre four eight hours. They basically stopped his heart so they could work on him. We had to put his life in the hands of people we'd only met, very briefly, once. But we had to trust them," Gemma added.
After five months in Birmingham Oakley made good progress and returned home. However, due to another underlying health condition he cannot undergo the third and final part of his heart treatment which means he's likely to need both a heart and lung transplant soon.
"To look at him he looks like a healthy boy, apart from the fact his lips are blue. He can't walk very far and has a wheelchair," said Gemma.
"But he's overcome everything. I'm very proud. He beats the odds every single day. He's the happiest little boy and he never moans. Everybody says he lights up the room with his smile when he walks in."
As Oakley, who will turn six in May, is in relatively good health considering his difficult start to life, medics want to put off the risky double transplant for the time being. While most of us have 100% oxygen saturation, Oakley's is constantly at around 70%.
Gemma added: "We don't know how long we've got left with him or what the future holds, but at the moment he's got a good quality of life and we just want to do as much as we can with him.
"He absolutely loves swimming, but he can't go in local swimming pools as they're too cold, so we've got a hot tub in the garden which he'll enjoy in the summer.
"His school - Idris Davies School - has been amazing. They did a big charity day where the pupils wore half uniform and half normal clothes to mark the fact Oakley has half a heart."
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