A baby girl who had pioneering spina bifida surgery whilst still being in her mother’s womb has celebrated her first birthday at home.
After diagnosing Elouise with the condition last year, doctors offered her parents a termination saying the outcome was “bleak”.
Her parents, Kieron and Bethan Simpson, refused to have an abortion and now Elouise, who is described as “happy and smiley” by her mother, is thriving.
The Simpsons were overjoyed when they found out they were expecting a baby, but were left disheartened when a midwife discovered their baby had a disability during the 20-week scan.
However, two days later, a specialist at University College London Hospitals (UCLH) told the couple about the possibility of a ground-breaking new surgery.
“There was a bit of hope in that darkness,” Bethan said.
The mental health nurse underwent a four-hour operation at 25 weeks, during which her womb was opened and a series of tiny stitches were used to close the gap in Elouise’s spine.
Bethan and Elouise were among the first in the UK to undergo the procedure in January 2019. The successful surgery was funded by a charitable trust between UCLH and Great Ormond Street Hospital, before the NHS made it routinely available in April last year.
Bethan said her daughter’s regular progress checks had been postponed due to the COVID-19 outbreak but said Elouise is developing normally and is thriving at home.
She told the BBC: “We certainly didn’t expect we’d be marking today in the middle of a pandemic.”
The couple say their priority now is to “shield” Elouise while keeping home life “normal and fun.”
Bethan also raised concerns that pregnant women are being misinformed on spina bifida.
“Since becoming a mum I’ve had the chance to reflect on that traumatic time. My only option was to fight. But most importantly, it was about being informed.”
“There is a lot of negative information around spina bifida.”
“Without being fully informed as parents, Elouise would not be where she is now.”
Her concerns were shared by a mother who described the relentless pressure she faced to have an abortion after doctors diagnosed her baby with spina bifida last year.
Natalie Halson, who refused an abortion ten times, said doctors “made out like an abortion was my only option and explained that if I went ahead with the pregnancy my baby would be wheelchair bound and have no quality of life.”
“When I got off the phone I went and did tonnes of research and found out that there were options for my little girl – I felt suddenly really angry that they had made out I had none.”
Similar concerns have been raised by parents of children with Down’s syndrome.
A survey of over 1,400 parents revealed many are being misinformed and misled over the condition and in some cases are being pressured into abortion only days away from giving birth.
One mother, whose child is now three-years-old, said medical professionals told her they could leave her baby with Down’s syndrome to die if it was struggling after birth.
Under UK legislation, babies affected by Down’s syndrome and spina bifida can be aborted right up to birth.
This includes Northern Ireland, where an extreme abortion law has been imposed on the province.
In England and Wales – where abortion is available up until birth if a baby has a disability – people with disabilities are unjustly and disproportionately targeted by abortion legislation.
The latest available figures show that 90% of children diagnosed with Down’s syndrome before birth are aborted in England and Wales.
Additionally, estimates predict 80% of unborn babies diagnosed with spina bifida, each year, are aborted.
Northern Ireland had a very different approach and embraced a culture of welcoming and supporting people with this disability rather than eliminating them.
This is reflected directly in the latest figures (2016) from the Department of Health in Northern Ireland, which show that while there were 52 children born with Down’s syndrome, in the same year, only 1 child from Northern Ireland with Down’s syndrome was aborted in England and Wales.
Northern Ireland MLAs have called for an opportunity to introduce new legislation to repeal the new extreme abortion regime.
A spokesperson for Right To Life UK, Catherine Robinson has said: “The revelations of women who experience daily the lives of those with Down’s syndrome, spina bifida and other disabilities should be listened to.”
“Currently, women are making life or death decisions influenced by outdated and prejudiced views on disability.
“Expectant women are sometimes not given accurate information about the reality of life with these conditions and there are stories of doctors suggesting ‘abortion is the only option’.”
“We call on MLAs in Northern Ireland to save lives by bringing forward legislation as soon as possible to repeal the extreme abortion regime which allows for disability-selective abortion right up to birth.”