Two years ago, little Alfie Hillman defied the odds. Told he had a condition known as Trisomy 18, Alfie’s parents were told by doctors that he would only live for a few minutes after birth and they suggested abortion.
Thankfully, they refused. Now the little guy is about to celebrate his second birthday – on May 3rd.
Trisomy 18, also known as Edwards syndrome, is a condition that is caused by a error in cell division, known as meiotic disjunction. According to the Trisomy 18 Foundation, the condition is extremely rare and occurs in only 1 out of every 2500 pregnancies in the United States and about 1 in 6000 live births. Former Senator and presidential hopeful, Rick Santorum, is familiar with the condition because his daughter Bella was born with it.
Parents Shane Hillman, 44, and Sharron Swales, 45, of Wales learned at 27 weeks that their son had the condition. Here’s what happened:
wales, 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.”
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“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.
Alfie’s parents have no regret not taking their son’s life before birth:
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.”
In the United States, unbelievably, now Bella is seven and the Santorums are releasing a new book called, Bella’s Gift, about their family’s journey with their daughter’s condition. The book discusses the morality of abortion as it relates to children with disabilities, especially for children diagnosed with Trisomy 18. Both Karen and Rick wrote the book and their chapters were written separately.