April 22, 2015 (LifeSiteNews.com) – Alfie Hillman is thought to be the only child in Wales with the rare genetic condition mosaic trisomy 18. The rare disorder caused him to be born premature at 28 weeks, weighing just one pound, three ounces.
The diagnosis was made when Alfie’s mother, Sharron Swales, was 27 weeks along in her pregnancy. The physicians who delivered the bad news also prompted the boy’s parents to consider an abortion, because they only expected Alfie to live a few minutes after he was born.
“It was the hardest thing we’ve been through,” Swales told the South Wales Argus News. “It was a stressful time when we found out he wasn’t growing, as he stopped growing at 20 weeks.”
“Some only live a couple weeks,” said his father, Shane Hillman. “Not many babies survive. A lot are stillborn; they said he should be able to survive three minutes.”
Nevertheless, the couple turned the abortion down, and despite the difficult situation, knowing her son was alive inside her, Swales said they did what any parents would do: give their child a chance at life.
“I cried for a week solid. It was terrible,” she said. “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,” Swales said. “Any parent would.”
The said when they heard Alfie first cry after he was delivered via Cesarean section, it was such a relief.
“Miracles do happen,” Swales said.
Odds aren’t favorable for children diagnosed with Alfie’s condition, also known as Edwards’ syndrome. Caused by an additional copy of chromosome 18 in some or all of the cells in the body, experts in the UK say only around one in 12 babies born with it will survive past one year. Those who do suffer serious physical and mental disabilities.
He was first in an incubator and on oxygen, spending two weeks in critical care before transferring hospitals.
After 14 weeks, Alfie was allowed to go home – weighing 5 lbs., 5 oz. – and remaining on oxygen for the first eight months of his life.
“When he was born you could hold him in your two hands – that’s how small he was,” Swales said.
“The worst thing was leaving him behind in the hospital,” she continued. “You would dread every phone call in case anything happened to him. He was always on your mind.”
“He’s thriving now, but it could have gone a totally different way,” said Swales. “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.”
Hillman and Swales will celebrate Alfie’s second birthday on May 3, a milestone given his start in life.
Another way Alfie defied the odds was by avoiding heart surgery, something most trisomy babies must have. Scans revealed a hole in Alfie’s heart that doctors said would close on its own.
As his second birthday approaches, Alfie has reached 17 lbs. but is still smaller than most children his age. He began walking in March and is otherwise healthy and active. A medical consultant and dietician visit him every three months.
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A Facebook page, titled Alfie’s journey, has been established chronicling his story.
“We want to raise awareness and give people support,” Swales said. “We just want to tell people there are success stories out there.”
What the future holds for him physically is still largely unknown. But for now, the family looks forward to throwing a second birthday party for their “mischievous and fun” child, whom they describe as a “precious bundle of joy.”