Baby girl who had surgery in the womb celebrates first birthday, but abortion prejudices remain

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.

Additionally, Right To Life UK has launched its Save Lives: Repeal campaign urging Northern Ireland’s politicians to save lives by repealing the 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.”

Premature twin girls thriving after doctor suggested leaving them to die

A mother has criticised doctors who refused to give her care and said she should let her twin daughters die when she went into labour at 22 weeks.

Kayla Ibarra and her twin daughters, Luna and Ema, are now thriving at home with their older brother Noah and father Dardo.

One year on, revealing their story on her blog, the mother-of-three said the twins are “‘typical one-year-olds’ and no one would even know they were born 18 weeks premature.”

Kayla and Dardo were already parents to 18-month old Noah when they decided they would like to have another child. Both were delighted months later to find out they were expecting twin girls.

Kayla said the pregnancy felt “normal” until she noticed a small spot of blood when she went to the toilet. She called her midwife who recommended she went into hospital to make sure she didn’t have a bladder infection.

The pregnant mother rushed to hospital but had to wait four hours before seeing anyone because the nurses had “forgot” she was there.

When Kayla did eventually see a nurse, she was rushed into a backroom for a urine test and then called downstairs for an ultrasound.  

When the urine test came back clean, the mother burst into tears because she “knew this was labour.”

She continued: “I started bawling my eyes out as I was finally wheeled to the ultrasound room.

“While getting the exam done, I kept telling the tech I was having contractions. She kept telling me to relax and all would be fine. I stood up and BAM, my water broke.”

Through tears a concerned Kayla asked, “what’s going to happen to my daughters?”.

As she was pushed in a wheelchair to an upstairs room of the hospital, a nurse responded, “the babies will be born today and they will die.” 

By the time Kayla was taken back upstairs, her whole family was there waiting for her. They asked the nurse, “what do we do, what can we do?”.

However the nurse again said that “there is nothing that can be done, the twins will be born today and they will die.”

Realising they wouldn’t get the care or help Kayla and her family wanted for her twins, the family began to search for alternative hospitals with a neonatal intensive care unit (NICU) who would give her unborn twins a chance at life.

The family found a hospital in Ontario that was willing to help premature babies from 24 weeks, but her doctor refused to transfer Kayla to the new hospital and even refused to administer medication for her pain.

Furthermore, the doctor refused to allow Kayla to see her twins or hear their heartbeats dismissing the plea as a “waste of time,” instead saying “this [the labour] is going to be quick, let’s get it over with.'”

However, Kayla’s contractions stopped and her doctor agreed to let her rest.

Despite the fact her labour had stopped, a new doctor who had been assigned to Kayla urged her to deliver the twins the following morning through an induced labour.

However, knowing they wouldn’t intervene to save her twin girls, Kayla said: “I told him I refused to start labour again and as long as the twins are in me they are breathing and safe. He also denied me medication that would help the twins lung and brain develop.

Four days later, a shattered Kayla went into labour again at 22 weeks and two days – which was four days too early for the nearby hospital to intervene.

“I felt so defeated. I lost,” Kayla said.

Fortunately, a new doctor had been assigned to Kayla just as midwives were setting up the delivery room.

The doctor thought it was worth calling the hospital in Ontario who agreed to take the premature babies on.

Recalling the moment, Kayla said: “I felt hope. Finally, someone was going to just call and see. Within 15 minutes, he was back in my room coat on and said, ‘two hospitals agreed to take you… Soon, we were racing down the highway.”

Within hours, Kayla had given birth to Luna and Ema.

The twins barely weighed 1lb when they were born and spent a total of 115 days in the NICU, but they recovered remarkably well and were able to go home before their original due date.

Kayla said her twins have changed her life forever and she now wants the world to know premature babies can survive and can thrive.

“We went from a 0% chance of survival to celebrating over one year of life,” she added.

The survival rate for extremely premature babies in the UK 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 – the age of Kayla’s now healthy and thriving twins.

The previous clinical guidance, drafted in 2008, included a presumption against attempting to provide life-saving treatment to a baby born before 23 weeks, on the basis it would not be in the child’s best interests.

In 2008 only two out of ten babies born alive at 23 weeks went on to survive. Today it is four out of ten, according to a new analysis from the British Association of Perinatal Medicine.

Furthermore, the majority of premature babies grow up to be healthy adults without any major health problems, a study revealed last year.

In a Facebook post post, Kayla recalled what a doctor said to her on day 65 of the girls’ NICU stay:

“The girls really have changed the way we view micropreemies here and in particular 22 weekers. It’s because of them that we have put certain protocols in place when dealing with micros and we have learned so much do’s and don’t’s from the girls. They have taught us so much and because of them, other 22 weekers will have the chance in our hospital. You did that, the girls did that.”

Right To Life UK spokesperson Catherine Robinson said:

“Stories of premature babies fighting and thriving, like Luna and Ema, along with recent new guidance and advances in medicine, showcase why this issue is one that Parliament should urgently revisit. It has been over a decade since time limits were last debated fully in Parliament in 2008. 

“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. Our current abortion time limit is way out of line with the rest of Europe where the most common abortion time limit is 12 weeks.

“We support any change in law that would help lower abortion numbers and save the lives of babies in the womb.”

Baby boy born with severely swollen head due to rare condition is defying the odds after parents refuse abortion

A baby boy born with a swollen head is defying doctors who told his mother to terminate her pregnancy because he wouldn’t survive birth. 

Doctors did not expect Lorenzo Pontone to survive when they diagnosed him with severe hydrocephalus – a condition which causes fluid to build up in the skull, making the brain swell – at his 20-week scan and offered his parents an abortion.

However, the couple wanted to give Lorenzo a chance – despite pressure from doctors to abort. 

His father, Fernando Pontone said: “To me it sounded like the first thing they said to do was terminate.

“In the end, we just didn’t think it was fair. He was halfway to being born. He had arms and legs and a face. We couldn’t kill him.”

His mother, Nichaela Pontone said: “While we considered it [abortion] because doctors said it was the best thing to do, we decided to let nature take its course because he was half way there.”

Lorenzo was delivered, on 8 January, by caesarean section after 36 weeks because his head was growing so quickly. 

Fernando said: “They took him out and rushed him straight to this little table, as it took a good few minutes to get him round.

“It felt like an eternity until we heard him cry and the tears of joy started.”

During the first two weeks of his life, Lorenzo has needed brain surgery, support with his breathing and was unable to close his eyes.

However, the little fighter has since gone on to defy the odds and amaze his parents and doctors by being able to breathe and close his eyes independently.

He has also had a tube, known as a shunt, inserted into his head which will drain the fluid from his brain down into his stomach, meaning that the swelling on his head will reduce with time.

Nichaela and Fernando don’t know how the condition will affect their son long term but are proud of their “miracle” baby for even surviving birth.

Fernando said: “I’m so glad we didn’t go through with a termination…

“As soon as we saw him we fell in love with him. I couldn’t stop shivering, we were crying our eyes out. We’re so proud of him.”

The couple hope to move Lorenzo to the Huddersfield-based Hospice when he is discharged from hospital, as a halfway house before eventually bringing him home.

The little boy has been introduced to his brothers and sister, Koby, 12, Lily, 10, Thomas, eight, Bella, five and Gino, 10 months.

Nichaela said: “He’s brilliant, he’s very demanding with food and his brothers and sisters just love him.”

According to the Hydrocephalus Association, hydrocephalus affects around one in 1,000 babies, making it as widespread as Down’s syndrome and more common than spina bifida.

Nichaela has created a Facebook group detailing Lorenzo’s battle with the condition.

She told the Mirror: “I want to raise awareness about hydrocephalus because I’ve spoken to quite a few other mums about it that have had kids with it or similar brain conditions.

“It’s not well known and I also want to show that doctors aren’t always right when they give you worst case situations.”

She added: “He’s proved a lot of doctors wrong so far. They said he would not be able to breathe on his own, they said he would have seizures. He hasn’t had any seizures since he was born.”

Lorenzo’s story is similar to that of many other babies, including seven-year-old Noah Wall whose parents were asked on five separate occasions to consider abortion. 

Doctors gave Noah Wall, who was born with just 2% of his brain and paralysed from the waist down, just a few days left to live. 

However, Noah moved his foot for the first time after undergoing pioneering therapy in December.

Boy born with rare condition defies expectations after parents refused abortion

A baby boy born with part of his brain protruding from his skull is thriving after his parents rejected pressure to abort him.

Doctors did not expect Ozzie Gordon to survive more than a few days when they discovered the condition.

They advised his parents, Omobola and Checotah Gordon, to consider an abortion. But, wanting to give their son a chance, they refused and now Ozzie continues to defy expectations.

After refusing abortion, Ozzie’s parents even had to create a palliative care plan in the final weeks of pregnancy.

On 1 October, 2018, Ozzie was born weighing a healthy 7lb 5oz.

However, he had an encephalocele – a rare congenital defect where a portion of brain tissue and associated structures are outside the skull.

The condition can in some cases be fatal at birth, but Ozzie beat the odds. Two days after his birth, Ozzie was discharged from the hospital and allowed to go home with his mother and father with the support of hospice nurse visits.

At four months old, Ozzie underwent a successful surgery to remove his encephalocele.

Despite being delayed in his development and having some treatable health conditions, Ozzie is now thriving and celebrated his first birthday last October.

His parents call Ozzie a “miracle” and are determined to give their smiley baby a normal life.

Omobola decided to share the families journey on Instagram to help other families who have children with special needs or need support following a similar pregnancy scan diagnosis to their own. 

She said: “I’m glad that I’ve decided to share Ozzie’s story and tell people about what we were going through with him because the emotional support we have received has completely surpassed my expectations.

“It is amazing to see strangers from other parts of the world reach out to me and say how much they are supporting us and praying for Ozzie. That feeling is just unbeatable.”

She added: “We have had other special needs parents some that we know and some that we don’t know reach out to us and express their gratitude of us doing the right thing by Ozzie and being there for him and loving him the way we do.”

“We hope that he can be a vessel to touching people’s hearts and being an example that miracles do happen and special children deserve just as much love and care as other children.”

The NHS estimates that encephalocele will affect between 1 and 2 in every 10,000 births.

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