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.”

Baby girl given just minutes to live now flourishing aged 3

A three-year-old from Northern Ireland is thriving at home after her mother rejected advice from doctors to have an abortion.

Doctors did not expect Karlie, who was born with Encephalocele – meaning part of her brain was poking through a hole in her skull – to live for more than just a few minutes.

They advised her parents, Gemma-Sarah and Kyle, to consider an abortion.

But they refused to give up on their daughter and now Karlie continues to defy expectations.

Three-weeks after her birth, Karlie underwent a four-and-a-half-hour operation to cut away the protruding part of her brain and close the hole between her eyes.

The brave little fighter was left with a scar running between her eyes, but otherwise made an incredible recovery, leaving medical professionals stunned.

She has since been diagnosed with other health problems, including cerebral palsy and a rare condition called Alobar Holoprosencephaly – which means her brain is fused across the middle and hasn’t divided into the usual left and right hemispheres.

As a result, doctors warned Gemma-Sarah and Kyle that their daughter could be profoundly disabled and would be unlikely to ever walk and talk.

But, again, Karlie has defied all expectations.

Now aged three, she has taken her first steps and is learning to talk. Karlie’s favourite things are Peppa Pig and cheesy pasta “noo-noos”.

Last year, she also became a big sister to Sáorfhláith-Jade.

‘There was no way I was giving up on her’

Recalling events to The Sun, Gemma-Sarah said: “Karlie has defied every expectation so far.

“Every prediction for her has been wrong. If my daughter won’t give up, then I’ll never stop fighting for her.”

Gemma-Sarah and Kyle were excited to be first-time parents.

But when they went for their 20-week scan in Summer 2016, their worlds were turned upside down.

“I was looking forward to finding out the baby’s sex, but the sonographer went really quiet and then went to fetch a doctor,” Gemma-Sarah remembers.

“The doctor told us we were having a little girl, but they’d found a large mass on the front of our baby’s face. It also looked like her brain was severely deformed.

“We were advised to think about a termination. Our baby had no chance of survival.

“Tears were pouring down my face and I was shaking my head. No way. No. Absolutely not.

“I couldn’t get words out so I just carried on shaking my head. There was no way I was giving up on her.”

Medical professionals told Gemma-Sarah that Karlie would most likely die in the womb. They told her to go home and rest, but to come back to hospital if she felt the baby had stopped kicking.

However, her pregnancy continued until November 3, 2016, when at 36-weeks her waters broke.

Even then, though, doctors expected the worst.

“The looks on the nurses’ faces as they settled us into a delivery room said it all,” says Gemma-Sarah.

“Our baby would most likely be stillborn and everyone knew it.

“We were warned that if she was alive, she’d only live for 10-15 minutes – just long enough for a quick cuddle.”

Yet, as Karlie came into the world, she let out a healthy cry.

Gemma-Sarah assumed she was hearing a child in the neighbouring bay until her baby was placed in her arms.

“She was so beautiful. I hadn’t known what to expect. I’d been terrified she would look horribly deformed,” she recalled.

“But she was gorgeous, with her pretty wee eyelashes, rosy cheeks and ten tiny fingers.

“There was no mistaking her problem though. Part of her brain was literally sticking out of her forehead, between her eyes.

“It looked like a small purple ball. I told Kyle it was her wee unicorn.”

Karlie was placed in an incubator next to her mother’s bed and the family were told to say their goodbyes.

But instead of slipping away the baby began to snuffle for a drink.

She was then fitted with a feeding tube and moved to a neonatal intensive care unit where she began filling her nappies.

Whilst there, Gemma-Sarah demanded a second opinion on her daughter’s future.

Dr Mano Shanmuganathan, a surgeon in Belfast, heard about Karlie’s case and sent scans of her brain to experts at Alder Hey Children’s Hospital in Liverpool.

They came up with a plan to cut away the portion of Karlie’s brain that was protruding and Gemma-Sarah decided to proceed and give her daughter the best possible chance at life.

The surgery went well and Karlie made an excellent recovery.

Gemma-Sarah recalled: “I’ll never forget the moment when the porters wheeled her away down a corridor at Belfast’s Royal Victoria Hospital…

“I had no idea if I’d ever see her again.”

“She still has a wee red scar on her face from the operation, but we think she’s absolutely gorgeous, with her blonde ringlets and smile that lights up the room.”

Determined to continue fighting for her daughter, Gemma-Sarah is now planning to attend an international conference on Holoprosencephaly in the USA in Summer 2022.

“My dream is to meet other families with kids with the same condition, and hopefully get Karlie seen by the world’s leading experts,” she says.

“Karlie’s our sunny wee miracle and she’s not done yet!”

Premature twins born before legal abortion limit now flourishing at home

Premature twins born five days apart have beaten the odds to become among the youngest to survive premature birth in Britain.

Dolly was born at just 23 weeks and one day weighing just 1lb and 1oz (482g). Five days later Albert was born weighing 1lb 6oz (624g).

The twins are now flourishing at home with parents Shona and Darren.

Dental nurse Shona Jeffery’s pregnancy had been developing as expected until she went into labour when she was just 22 weeks and six days pregnant.

After rushing to her local hospital, the couple were told that their babies were too young to save.

“They said there was nothing they could do for us and sorry that we had lost our babies as they was under the 23 weeks,” Shona told the Sun.

“They had no facilities to help if they arrived. They would just pass them to us once they had been born and they then put us in a room for this to happen.”

But, despite her waters breaking and contractions beginning, Shona did not give birth.

Then, as the clock struck midnight Darren and Shona received some hopeful news.

As Shona had reached 23 weeks – one week shy of the 24-week legal limit for abortions in England and Wales – doctors were willing to intervene and try and save the babies.

Shona was given steroids to help boost the twins’ still-growing lungs and she was sent by ambulance to Brighton Hospital.

The couple were warned that if the twins were delivered on the way to Brighton that they’d not survive the journey.

“Thankfully, we made it there fine,” Shona said.

One day later, two teams of specialists helped deliver Dolly at 23 weeks and one day.

Surprisingly, Shona’s labour stopped.

Doctors then told Shona she could deliver the second twin at any point but could also end up going full term.

However, the wait wasn’t too long.

Five days later Albert was delivered naturally, at 23 weeks and 6 days.

“That was when the real battle began. Watching them fighting for their life each day,” Shona said.

“But every day they grew a little bit more and became a little bit stronger.”

Both twins needed eye surgery and Dolly had an operation to fix a hole in her heart.

In March, Albert, the stronger of the twins was discharged from a neonatal intensive care unit and was allowed home.

And last month, to the family’s joy, Dolly also left hospital.

Darren, a landscape gardener said: “Against the odds our little miracles have survived and shocked everyone and have come home.

“Every doctor we have spoken to said we should count our lucky stars. They are just so precious to us.”

Dr Asma Khalil, a spokesman for Tamba (Twins and Multiple Births Association), said: “The fact that these babies are now doing well is incredible.

“Twin pregnancies delivered at 23 weeks would have far poorer chances of survival compared to a singleton pregnancy.

“Of babies born at 23-24 weeks, only about 50 per cent would survive and 50 per cent of the survivors would have some sort of disability.

“It would be fair to say that in circumstances where twins are born this early, most doctors would be preparing the family for the worst.

“So the fact these babies are now doing well, months on, is incredible.”

Last year, it was revealed that the survival rate for extremely premature babies has doubled over the past decade, prompting new guidance allowing doctors to try to save babies born as early as 22 weeks into a pregnancy.

Additionally, a recent study has revealed the majority of premature babies grow up to be healthy adults without any major health problems.

Sadly, it is currently legal in Great Britain to abort unborn babies up to 24 weeks, or up to birth if doctors believe the baby will be born with a disability.

In 2018, the latest year with published data, 845 live births were recorded in England of babies with a gestational age of less than 24 weeks, according to the Office for National Statistics

A spokesperson for Right To Life UK, Catherine Robinson said: “It has been over a decade since abortion time limits were last debated fully in Parliament, in 2008. Since then the survival rate for premature babies has doubled.

“Our current abortion time limit, at 24 weeks, is way out of line with medical breakthroughs and the rest of Europe where the most common abortion time limit is 12 weeks, making time limits an issue Parliament should urgently revisit.”“Additionally, independent polling from ComRes shows that 70% of women in the UK want to see the time limit for abortion reduced to 20 weeks or below.”

Baby girl with Down’s syndrome, given just 10% chance of survival, celebrates first birthday

A baby girl given just a 5-10% chance of survival is flourishing at home with her parents and celebrated her first birthday yesterday.

Arabella’s parents, Tiffany and Paul Kim, were warned by doctors that it was unlikely their unborn baby would survive birth after a prenatal scan revealed hydrops fetalis – a condition which causes an abnormal build-up of fluid levels in the womb.  

Around the same time, Arabella was given a 98% chance of being born with Down’s syndrome.

Undeterred that the “odds were greatly stacked against [them]”, Tiffany and Paul wanted to give their daughter a chance at life.

The couple immediately began seeing an obstetrician specializing in high-risk pregnancies and monitored baby Arabella by ultrasound every one-two weeks.

With each passing scan, Arabella showed signs of improvement, with fluid build ups around her stomach, lungs and heart shrinking.

Then, a 20 week scan revealed the build-up of fluid was completely gone.

Born at a very healthy 7.1lbs (3.22kg), Arabella had no need for a neonatal intensive care unit and was able to go straight home with her mother and father when she was born on 17 July 2019.

‘Overcome by beauty and overwhelmed with thankfulness’

Kim told Love What Matters: “The moment I first held her in my arms, I was overcome by her beauty and overwhelmed with thankfulness. And my fears concerning Down’s syndrome melted right away. I was just grateful she had come safely and healthily into this world.”

She added: “[Doctors] were able to immediately lay her on my chest instead of rushing her over to get vitals on her like they did with my two other typical kiddos. There was no need for the NICU, no need for supplemental oxygen, and she was able to even latch and breastfeed almost right away.”

Reflecting back on her pregnancy the mother-of-three said: “If only myself back then could have fast-forwarded ahead to the day Arabella was born and to the present. Because then, I would have been able to see there was nothing to be afraid of and that my life would actually be infinitely better because of Arabella being in it,” she said.

Pressured to abort

Last year, it was revealed that the number of babies born with Down’s syndrome has dropped by 30% in NHS hospitals that have introduced new non-invasive prenatal tests.

The release of the figures arrived shortly after a report detailed how pregnant mothers were being pressured by some medical professionals to reconsider an abortion, having previously refused one – sometimes on multiple occasions.

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.

Another mum told how even at 38 weeks pregnant she was being offered an abortion.Currently, abortion for disabilities including Down’s syndrome, cleft lip and club foot is legal right through to birth in England, Wales and Scotland, and 90% of babies with Down’s syndrome identified in the womb are aborted.

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💐My dearest Arabella, How has one year gone by already?! Every day with you is a gift. You were not even supposed to survive. The doctors said you most likely would not even make it to birth, and yet here you are, the very definition of a miracle! I don’t like to imagine the reality that they had predicted, a world without you in it; it hurts way too much. Instead, you are here, and I don’t take that for granted. I have been blessed by a love unlike any other. I have gotten to experience joy personified. And every day I have been graced by the presence of an angel. All because of you. Arabella, my love for you is deeper than any words could ever describe. I love you more than life itself. I thank God constantly that He allowed you to make it into this world and that He chose me to be your mama. Happy first birthday, my beautiful, amazing, and precious baby girl! Know that I will always love you exactly for who you are. Love, Your Mama . 🇰🇷Arabella is wearing a traditional Korean dress, called a hanbok, to honor her Korean heritage. It is customary to wear this on the first birthday and take part in traditional celebration and customs. . As you can see as you scroll through the pics, Arabella was not a huge fan of wearing her dress😂 . . . #downsyndrome#oneyearold#firstbirthday#wouldntchangeathing#loveofmylife#miraclebaby#dohl

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