A four-week-old baby born with a swollen head the size of a football is defying doctors who told his mother 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.
Ms Lewis, 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.
And as well as needing a colostomy bag because he was born without an anus, an MRI scan taken after he was born showed he had far less brain matter than he should have, meaning he is only being kept alive by his brain stem.
However, 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 became pregnant while using contraception.
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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
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.’
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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
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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’
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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
The hydrocephalus caused the ventricles (cavities) in Lorenzo’s brain to become severely enlarged, a condition known as severe ventriculomegaly.
This also caused part of his brain to rupture.
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, raising pressure inside the skull, which squashes the surrounding brain tissue.
In some cases, this can cause the head to steadily grow in size, convulsions, and brain damage. It can be fatal if left untreated.
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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
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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
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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
And an MRI scan taken after he was born showed that it is only Lorenzo’s brain stem, which controls basic body functions such as breathing and swallowing, which is keeping him alive.
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.
This means that the swelling on his head will reduce with time.
Mr Pontone 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.
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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
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Lorenzo was also born without an anus and so will need a colostomy bag for life
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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.’
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.
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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
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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.’