AN EBBW Vale boy who was given only three minutes to live is about to turn two-years-old.

Alfie Hillman, who will mark his birthday on May 3, was born prematurely at 28 weeks and weighed just 1 lbs3 oz.

Parents Shane Hillman, 44, and Sharron Swales, 45, of Hendre, Newtown, were told at 27 weeks that their baby had a genetic condition called mosaic trisomy 18.

Alfie is believed to be the only child in Wales with the condition.

The genetic condition is also known as Edwards’ syndrome, and is caused by an additional copy of chromosome 18 in some or all of the cells in the body. According to NHS Choices around one in every 12 babies born with Edwards’ syndrome survive beyond one year, and do so with severe physical and mental disabilities.

The couple were advised by doctors that Alfie would likely only live a few minutes and were asked whether they wanted to have an abortion.

Ms Swales, who is an auxiliary nurse at Nevill Hall, said: “It was the hardest thing we’ve been through – it was a stressful time when we found out he wasn’t growing as he stopped growing at 20 weeks.

“I cried for a week solid it was terrible. I could feel him inside of me moving – I was having daily scans and could see his heartbeat. I could see him moving – he deserved a chance.”

“We didn’t know how Alfie would be like when he was born but we were prepared to take the chance and we would have done it for him – any parent would,” she added.

Mr Hillman, Alfie’s father and full time carer, said: “Some only live a couple weeks. Not many babies survive. A lot are stillborn – they said he should be able to survive three minutes.”

He was born at the University Hospital of Wales, Cardiff, by caesarean section in 2013.
His parents said it was such a relief when they heard him cry for the first time.

Alfie was in an incubator and on oxygen. He spent two weeks at the UHW before he was transferred to the Royal Gwent Hospital.

Alfie spent 14 weeks in total in hospital after he was born and weighed 5lbs 5oz when he was allowed home. He was on oxygen for eight months after he was born.

Ms Swales said: “When he was born you could hold him in your two hands that’s how small he was. I had my first cwtch when we got to the Royal Gwent, he was about two-weeks-old.”

“The worst thing was leaving him behind in the hospital. You would dread every phone call in case anything happened to him. He was always on your mind.”

Alfie had numerous scans which found a small hole in his heart which doctors said would close on its own.

Ms Swales said they have been ‘really lucky’ as most trisomy 18 babies have to have heart surgery.

She said: “He’s thriving now but it could have gone a totally different way. His eyelashes only started developing a week before he came home. When he was born his skin was really thin as he was born at 28 weeks.”

Alfie has been walking since March and is a healthy active toddler who loves playing on his drums and harmonica. He now weighs 17lbs but is still smaller than most children his age.

He sees a consultant every three months and a dietician.

Alfie’s parents described him as mischievous and fun, adding he is their ‘precious bundle of joy.’ They will be celebrating his second birthday with a family party.

Ms Swales said: “We want to raise awareness and give people support. We just want to tell people there are success stories out there.

“Miracles do happen.”

They said it is still unknown what cells are affected by the condition. Although Alfie is healthy they do not know how his condition will affect him in the future or how long Alfie will live for.

To view Alfie’s journey visit facebook.com/pages/Alfies-journey/269887349819667