Five-year-old girl with rare condition ‘brimming with life’

A girl with a severe genetic condition who was not expected to survive birth has celebrated her fifth birthday.

Ella Bevis has the most serious version of Edwards’ syndrome, known as full trisomy 18. Although doctors said Ella’s condition was “incompatible with life”, Mum Chloe and Dad Kyle said she has “surpassed all expectations”.

Babies with the chromosomal condition often die before or shortly after birth, with only a 13 per cent chance of surviving their first birthday. In the UK, abortion is also permitted up to birth if the unborn child is deemed to have a disability.

Brimming with life

Mum Chloe explained that the “consultants didn’t think she’d survive long enough for us to take her home”, adding that “we really have no idea what she’ll do next!”

Remembering the doctors’ view that Ella’s condition was “incompatible with life”, she explained the label “basically means that if the child survives birth, they’ll never be able to do anything – walk, talk, eat, and all their organs fail.

“But anyone who has met Ella knows she’s the complete opposite of ‘incompatible with life’ – she’s full to the brim with life! She’s the happiest little girl you could ever meet – she’s constantly beaming.”

Misdiagnosis

Earlier this year, two couples revealed that they had abortions after their unborn children were misdiagnosed with illnesses.

Carly Wesson and her partner were told that a chromosomal test showed that their daughter would have Patau’s syndrome, a condition where one in nine babies born alive survive to their first birthday.

Although a second scan was scheduled, they were advised it would simply confirm the original diagnosis. Six weeks later, having gone through with an abortion, doctors informed them that the second scan was clear of the condition.

Another couple, said they agreed to an abortion after a consultant said their baby was likely to have a life-limiting condition. A post-mortem examination revealed no evidence of genetic variation.