Mother speaks of joy after baby who had spina bifida surgery in the womb learns to walk

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.”

‘Misinformed’

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.”

Canadian healthcare professionals offer unborn babies hope through coronavirus crisis

A team of healthcare professionals in Canada have provided continuous support and reassurance to parents of unborn babies with spina bifida during the coronavirus pandemic.

Expecting parents, like Amanda and Devon Allenby, were concerned their unborn babies wouldn’t receive corrective treatment for the condition when the outbreak of COVID-19 placed elective surgeries on hold.

Speaking to CTV News, Amanda said: “We were told because of COVID, we were not going to be able to have fetal surgery.”

However, the Ontario Fetal Centre medical team at Mount Sinai Hospital – the only place in Canada that performs corrective treatment for the condition – had a plan.

To overcome the challenge, the medical team started virtual appointments to help prepare expectant mothers for the in-womb surgery. It meant mothers could be fully informed on the procedure and meet the healthcare professionals who would be involved before arriving at the hospital.

With the help of these virtual appointments, Amanda became the first patient to have the in-womb surgery on her baby after the COVID-19 pause.

Amanda and Devon said although their son isn’t out of the woods yet, he is doing well and will be born at the end of July.

Father Devon added: “It’s one less procedure he’s going to have to go through and I’m super thankful to the doctors and physicians who were able to accept Amanda and get it done for her. A huge weight was lifted off our shoulders.”

Dr Greg Ryan, head of the fetal medicine program at Mount Sinai Hospital, told CTV news the in-womb surgery for spina bifida involves opening the mother’s stomach and taking the baby out of the womb.

A pioneering new surgery

Three years ago, two-year-old Eiko was the first baby to undergo the pioneering surgery in Canada.

Eiko’s mother, Romeila Son, was told her daughter faced paralysis, living in a wheelchair and brain damage without the surgery.

“Now she’s doing great. She’s walking around, chasing her brothers around the house, talking, knows her abcs, her shapes,” Son said.

Babies diagnosed with spina bifida in Canada and the UK can be aborted right up to the point of birth.

In the UK, it is estimated 80 percent of unborn babies diagnosed with spina bifida each year are aborted. In Canada the termination rate is over 65%.

However, pro-life campaigners are hopeful that the relatively new option of in-womb surgery, which has been made routinely available on the NHS, will decrease the number of unborn babies being terminated each year.

Mothers misinformed

Earlier this year, a baby girl, who had the surgery whilst still being in her mother’s womb, 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”.

However, Kieron and Bethan Simpson refused to have an abortion, and now Elouise, who is described as “happy and smiley” by her mother, is thriving.

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.”

Speaking about her daughter, Mirabelle, who has since had corrective surgery on her spine, Natalie said: “I look at Mirabelle now and think ‘I wouldn’t even have known you.’ It doesn’t bear thinking about.”

Girl, 3, with spina bifida defies odds by learning to walk after parents reject doctor’s advice to have an abortion

A three-year-old girl with spina bifida has defied the odds by learning how to walk unaided, after her parents rejected doctors advice to have an abortion.

Erica Ardolino-Comparin was told by her doctor that her unborn baby would be with myeloschisis – a severe form of spina bifida – and paralysed from the waist down during her 18-week-scan.

The doctor then went on to tell Erica she should have an abortion, which she declined. However, the doctor applied more pressure saying that, if Erica was his wife, he would urge her to have an abortion.

Erica told the Mail: “We were devastated when we were advised to terminate the pregnancy. It felt like we had just lost our child even though we hadn’t.

“Even when we told the doctor we were choosing not to go ahead with the option to terminate, he proceeded to give us this option multiple times afterwards and even let me know that if I were his wife he would tell her the same thing.”

Despite the doctor’s advice, Harper-Mae was born on 19 September, 2016 paralysed from the torso down with just partial mobility in her legs.

In February 2017, the little fighter began physical therapy sessions with activities designed to help her build mobility and strength.

Soon after, Harper-Mae learned to walk with the support of a walker inspiring her physical therapists to believe she may one day be able to take steps without it.  

Now, following corrective surgeries and the continued support of her parents and physical therapists, Harper-Mae has beaten the odds and can walk unaided.

Just this year, she made a significant breakthrough when she rode her bike without straps to hold her feet down for the first time.

Sharing the breakthrough on Facebook, proud mother Erica said: “This girl is absolute magic!!! After working so hard in therapy on learning to ride a bike with no straps, Harper is finally doing it. One of Harper’s goals for her last 3 week intensive therapy program was biking, and she did it!!!”

“Spina Bifida doesn’t have anything on this little cutie.”

Commenting further in the Mail, she said: “Watching Harper’s progress and her showing that she is more than a medical diagnosis makes us extremely proud.

“Whilst growing up with spina bifida isn’t always the easiest and certainly has its ups and downs, Harper has been able to live life just like a normal three-year-old little girl.”

She added: “We believe Harper is destined for great things and that she can help to change the world. At only three years old, Harper has been able to impact many people and we know that she will continue to do so for the rest of her life.

“We truly feel that she will be a bright light in our world and that she will help to not only redefine spina bifida but change the perspective that people have about disabilities in general.”

Sadly, babies diagnosed with spina bifida in the UK can be aborted right up to the point of birth.

Estimates have predicted that 80 percent of unborn babies diagnosed with spina bifida each year are aborted.

However, pro-life campaigners are hopeful that now that corrective surgery has been made routinely available on the NHS, the number of unborn babies terminated each year will fall.

In April, a baby girl who had pioneering spina bifida surgery whilst still being in her mother’s womb 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.

Likewise, Noah Wall, who was also born with the condition, is also flourishing at the age of eight after his parents turned down five separate offers to have an abortion. Noah has been joining in with the weekly #ClapForOurCarers event as he continues his remarkable progress.

Boy with ‘no brain’ continues to defy expectations after parents refused abortion five times

An eight-year-old born with spina bifida and only 2% of his brain has joined the weekly #ClapForOurCarers event as he continues his remarkable progress.

Doctors did not expect Noah Wall to live more than a few days and advised his parents, Shelley and Rob Wall, to consider abortion on five separate occasions.

But they refused, wanting to give their baby boy the chance of a healthy life, and Noah has been defying expectations ever since.

Describing the day Noah was born Shelly told the Mail: “The day he was born was amazing. We waited with baited breath.”

The couple were admitted to hospital a week before Noah was due to be born because the pressure on his brain was becoming dangerous.

There were 12 doctors in the operating theatre as experts performed a caesarean section and as Noah came into the world, he gave the doctors a sign.

Rob said: “He let out this amazing scream. We knew there was power there.”

Scans of Noah’s brain shortly after his birth show he had just 2% of his brain.

Miraculously, he kept on growing and so did his brain.

By the age of three, his brain had grown to a remarkable 80 percent of what it should be and is now nearly fully-functional, leaving medical professionals stunned.

Last year, Noah, who is paralysed from the waist down, moved his foot for the first time after undergoing pioneering therapy designed to alter the way the brain sends messages to his limbs.

Now the family sends regular updates to the doctors who told them Noah wouldn’t make it.

Shelly said: “He’s extraordinary. We send them emails and pictures and we take them presents at Christmas time.”

Every year, Noah gives out hundreds of Christmas presents to staff and patients at Great North Children’s Hospital in Newcastle – the hospital he was born in. With more therapy, it is hopeful he will one day deliver gifts on foot.

Rob said on the documentary, The Boy Without a Brain: “We were offered termination five times. It was never an option for us. To me, we wanted to give Noah that chance of life.”

“To hear his brain’s almost back to normal is beyond belief,” Shelly added. “Rob and I broke down when we heard the news. It was like a dream. I’ve never known anything like it. Even the consultants were in tears. Every time we see the doctors, they just shake their head. They’re just amazed at what he can do.”

Claire Nicholson, Noah’s consultant neurosurgeon, said in 2016: “He has surprised us through his life so far. He’s completely remarkable.”

She added that Noah teaches the medical profession that “you can’t ever know, doesn’t matter how many statistics you throw at something”.

Noah is just one of many babies who have defied the odds. 

Estimates have predicted that 80 percent of unborn babies diagnosed with spina bifida, each year, are aborted.

However, pro-life campaigners are hopeful that now the surgery has been made routinely available on the NHS the number of unborn babies terminated each year will fall.

Love my NHS #ClapForOurCarers sending everyone not just in the NHS but everyone that’s helping #ThankyouNHS

Posted by Noah Wall Model on Thursday, March 26, 2020