The mother of a one-year-old girl who had pioneering spine surgery while still in the womb has told the BBC seeing her daughter walk is “amazing”.
After diagnosing Elouise with spina bifida, doctors had offered her parents a termination, saying the outcome was “bleak”.
Her parents, Kieron and Bethan Simpson, refused and Elouise is flourishing having recently taken her first steps.
‘Hope in the darkness’
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.
Instead of a termination, Bethan and Kieron the parents were able to choose foetal repair surgery in January 2019 and were among the first families in the UK to do so.
“There was a bit of hope in that darkness,” Bethan said.
The mental health nurse underwent a five-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, but has since been made routinely available on the NHS.
Since that surgery, Elouise has celebrated her first birthday in lockdown and has recently begun to walk.
Bethan said they would “forever” be in the debt of staff at Great Ormond Street Hospital and University College London Hospital.
Describing seeing her daughter walk, she added: “It makes us feel amazing, she is an absolute joy. She’s everything you could want and more in a child, actually. She’s perfect…”
Dominic Thompson, consultant paediatric neurosurgeon at Great Ormond Street Hospital, said: “It is wonderful to see that Elouise is doing so well.
“As a paediatric consultant, it is very special and rewarding to meet someone that you operated on before they were even born, and I still get the wow factor when I get to see these children in clinic for follow up.”
Earlier this year, Bethan 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.”
A better option
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.”