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Baby boy born with severely swollen head due to rare condition is defying the odds five weeks after birth 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.

Help stop abortion up to birth for babies with disabilities including Down's syndrome & club foot

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Dear reader

In 2020, the UK Government imposed an extreme abortion regime on Northern Ireland, which included a provision that legalised abortion right up to birth for disabilties including Down’s syndrome, cleft lip and club foot.

A new Bill has been launched at the Northern Ireland assembly that will remove the current provision that allows abortion for ‘severe fetal impairment’.

It is under these grounds in the regulations that babies with disabilities including Down’s syndrome, cleft lip and club foot can currently be singled out for abortion in Northern Ireland because of their disability and can be aborted right up to birth.

Before the new abortion regime was imposed on Northern Ireland in 2020, disability-selective abortion for conditions such as Down’s syndrome, cleft lip and club foot was not legal and there was a culture of welcoming and supporting people with these disabilities 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 Northern Ireland, in the same year only 1 child from Northern Ireland with Down’s syndrome was aborted in England and Wales. 

This contrasts with the situation in the rest of the United Kingdom where disability-selective abortion has been legal since 1967.

The latest available figures show that 90% of children diagnosed with Down’s syndrome before birth are aborted in England and Wales.

We are, therefore, asking people like you to take 30 seconds of your time and add your support to the campaign to stop abortion up to birth for disabilities including Down’s syndrome, cleft lip and club foot in Northern Ireland.

If you live in Northern Ireland: 
Ask your MLAs to vote to stop abortion up to birth for disabilities including Down’s syndrome, cleft lip and club foot:

If you live outside Northern Ireland: 
Show your support by signing this petition in support of the Bill:

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Help stop abortion up to birth for babies with disabilities including Down's syndrome & club foot

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