Baby born with a swollen head defies doctors who told his mother to terminate pregnancy

A four-week-old baby born with a hugely swollen head is defying doctors who told his mum to terminate her pregnancy because he wouldn’t survive birth.

Lorenzo Pontone was diagnosed with severe hydrocephalus, a condition which causes fluid to build up in the skull, making the brain swell, at his mother Nikky Lewis’s 20-week scan.

Nikky, 28, and partner Fernando Pontone, 33, from Huddersfield, West Yorkshire, were offered a termination right up to full term because there was a high chance Lorenzo would be born deaf, blind, unable to move and prone to seizures.

But stay-at-home mother Ms Lewis insisted on keeping little Lorenzo and he had to be delivered by C-section after 36 weeks because his head was growing so quickly.

He has since gone on to defy the odds by breathing on his own and is now able to close his eyes, whereas he couldn’t after first being born.

Ms Lewis said she felt like his birth was ‘meant to be’ because she fell pregnant while using contraception.

Four-week-old baby Lorenzo Pontone was born with a hugely swollen head but is defying doctors who told his mum to terminate her pregnancy because he wouldn’t survive birth

Lorenzo was diagnosed with severe hydrocephalus, a condition which causes fluid to build up in the skull, making the brain swell, at his mother Nikky Lewis's 20-week scan. Pictured: Lorenzo with Ms Lewis and his father Fernando Pontone

Lorenzo was diagnosed with severe hydrocephalus, a condition which causes fluid to build up in the skull, making the brain swell, at his mother Nikky Lewis’s 20-week scan. Pictured: Lorenzo with Ms Lewis and his father Fernando Pontone

Nikky, 28, and partner Fernando Pontone, 33, from Huddersfield, West Yorkshire, were offered a termination right up to full term because there was a high chance Lorenzo would be born deaf, blind, unable to move and prone to seizures

Nikky, 28, and partner Fernando Pontone, 33, from Huddersfield, West Yorkshire, were offered a termination right up to full term because there was a high chance Lorenzo would be born deaf, blind, unable to move and prone to seizures

She said: ‘I don’t believe in termination and I was using contraception when I fell pregnant, so I felt like it was meant to be.

‘While we considered it because doctors said it was the best thing to do, we decided to let nature take its course because he was half way there.

‘As the pregnancy went on, the doctors told us he was at high risk of being stillborn or not surviving after birth – they said he would be blind, won’t walk, will be deaf and have seizures.

‘We couldn’t understand how they could tell that from a scan.’

But stay-at-home mother Ms Lewis insisted on keeping little Lorenzo and he had to be delivered by c-section after 36 weeks because his head was growing so quickly

But stay-at-home mother Ms Lewis insisted on keeping little Lorenzo and he had to be delivered by c-section after 36 weeks because his head was growing so quickly

Ms Lewis said: 'I don't believe in termination and I was using contraception when I fell pregnant, so I felt like it was meant to be'

Ms Lewis said: ‘I don’t believe in termination and I was using contraception when I fell pregnant, so I felt like it was meant to be’

Lorenzo has since gone on to defy the odds by breathing on his own and is now able to close his eyes, whereas he couldn't after first being born

Lorenzo has since gone on to defy the odds by breathing on his own and is now able to close his eyes, whereas he couldn’t after first being born

While in the womb, Lorenzo was diagnosed with severe ventriculomegaly, enlargement of the ventricles (cavities) of the brain, which caused part of his brain to rupture, causing the hydrocephalus.

And an MRI scan taken after he was born showed he had far less brain matter than he should have and so is only being kept alive by his brain stem.

He was also born without an anus and so will need a colostomy bag for life.

But the fluid on his brain is now beginning to dissipate after doctors fitted a tube known as a shunt which drains the excess fluid into his abdomen.

While in the womb, Lorenzo was diagnosed with severe ventriculomegaly, enlargement of the ventricles of the brain, which caused part of his brain to rupture, causing the hydrocephalus

While in the womb, Lorenzo was diagnosed with severe ventriculomegaly, enlargement of the ventricles of the brain, which caused part of his brain to rupture, causing the hydrocephalus

An MRI scan taken after he was born showed he had far less brain matter than he should have and so is only being kept alive by his brain stem. Pictured: Doctors stitched the corners of Lorenzo's eyes to allow him to close them

An MRI scan taken after he was born showed he had far less brain matter than he should have and so is only being kept alive by his brain stem. Pictured: Doctors stitched the corners of Lorenzo’s eyes to allow him to close them 

The fluid on his brain is now beginning to drain after doctors fitted a tube known as a shunt which drains the excess fluid into his abdomen

The fluid on his brain is now beginning to drain after doctors fitted a tube known as a shunt which drains the excess fluid into his abdomen

This means that the swelling on his head will reduce with time.

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 or brain tumors.  

It is caused when fluid becomes trapped in the brain and so builds up.  

Lorenzo’s father Fernando said: ‘I’m so glad we didn’t go through with a termination.

‘We thought about it because we thought it could be difficult and didn’t know if we’d be able to get through it but he’s so tough.

An MRI scan taken after he was born showed he had far less brain matter than he should have and so is only being kept alive by his brain stem

An MRI scan taken after he was born showed he had far less brain matter than he should have and so is only being kept alive by his brain stem

Lorenzo was also born without an anus and so will need a colostomy bag for life

Lorenzo was also born without an anus and so will need a colostomy bag for life

The fluid on his brain is now beginning to drain after doctors fitted a tube known as a shunt which drains the excess fluid into his abdomen

The fluid on his brain is now beginning to drain after doctors fitted a tube known as a shunt which drains the excess fluid into his abdomen

‘I wouldn’t be able to cope with what he’s been through.

‘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. Everything doctors said he wouldn’t be able to do, he’s done.’

WHAT IS HYDROCEPHALUS?

Hydrocephalus is a build-up of fluid in the brain, which can damage tissue.

Aside from an abnormally-sized head, other symptoms can include headache, nausea, vomiting, confusion and vision problems.

Hydrocephalus’ cause is usually unknown but may be due to issues with cavities in the brain or an underlying health problem that affects blood flow, such as heart disease.

It can also be acquired by damage to the brain due to a head injury, stroke or tumour.

Treatment is shunt surgery, which involves implanting a thin tube into the brain to drain away excess fluid to another part of the body where it can be absorbed into the bloodstream. 

If untreated, hydrocephalus can be fatal due to increased pressure compressing the brainstem, which is responsible for regulating heart rates and breathing.

A patient’s prognosis after surgery depends on their age and general health. 

Source: Brain and Spine Foundation 

Ms Lewis said it was ‘very emotional’ when their son finally cried after a ten-minute wait when he was born.

‘We had a planned c-section at 36 weeks because Lorenzo’s head was getting bigger and bigger so quickly,’ she said.

‘When he was born, he didn’t cry at first and we were just waiting for it for what felt like about 10 minutes.

‘We were so relieved when he did and it was very emotional. I thought he wasn’t going to make it.

‘At first, he couldn’t blink and his eyes were constantly open so the doctors had to stitch the corners of his eyes.

‘Now he can blink and open his eyes so he’s proven a lot of doctors wrong.’

Ms Lewis and Mr Pontone don’t know how the condition will affect their son long-term, but said the fact he has survived after birth is a miracle.

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

Ms Lewis said: ‘We’re just taking it day by day and we’ll figure it out when he reaches his milestones.

‘He’s brilliant, he’s very demanding with food and his brothers and sisters just love him.

‘We’ve got a lot of learning to do because he’ll be on medication for life.

‘We’ll have to learn how to change his colostomy bag and how to feed him, but it’ll all be worth it.’

The couple have now set up a fundraising page because Mr Pontone has been forced to take a break from his job at a supermarket has to care for their other five children.

Ms Lewis and Mr Pontone don't know how the condition will affect their son long-term, but said the fact he has survived after birth is a miracle

Ms Lewis and Mr Pontone don’t know how the condition will affect their son long-term, but said the fact he has survived after birth is a miracle

Ms Lewis said: 'We're just taking it day by day and we'll figure it out when he reaches his milestones'

Ms Lewis said: ‘We’re just taking it day by day and we’ll figure it out when he reaches his milestones’

The couple take it in turns to stay at the hospital with Lorenzo.

Dad Fernando added: ‘We just want to say don’t always listen to what doctors say, because they’re not always right.

‘I have proof – he’s here alive and kicking.’