Life Video

By Hannah Phillips


A two month-old baby born with a hugely swollen head has defied doctors to finally leave hospital for the first time.

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

Despite the tiny tot battling brain damage, Nikky, 28, and partner Fernando Pontone, 33, were finally able to take Lorenzo out of hospital for the first time last week [March 26].

Luckily, despite having a crushed skull the tot wasn’t born deaf, blind, unable to move and prone to seizures as doctors predicted and Nikky believes Lorenzo was ‘meant to be’.

She said her son has proven medics wrong repeatedly, first by breathing on his own almost immediately and now by leaving hospital despite doctors’ predictions it would never happen.

Stay-at-home mum-of-six Nikky, from Huddersfield, West Yorks, said: “He’s absolutely thriving.

“He’s doing so well and we’re glad he’s out of the hospital – it’s amazing.

“He’s been on his first walk and he loved it – the first time we took him outside it was emotional.

“As soon as he was in the pram and outside, he was really settled.

“We never thought we’d make it this far. He wasn’t supposed to even make it through birth.

“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.”

Fernando added: “It’s definitely exciting that he’s out of hospital. He’s just so tough.

“We never thought he’d be able to leave the hospital but he keeps doing things we were told he wouldn’t be able to do.

“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.”

Since leaving hospital, Lorenzo has made his first trip to the park and is enjoying getting to know older siblings Koby, 12, Lily, 10, Thomas, eight, Bella, five and Gino, one.

He is currently living between home and children’s hospice Forget Me Not while the family prepare their house to accommodate him full time.

Nikky said: “The other children absolutely love him. Gino adores him. When we showed him photos of Lorenzo he blows kisses.

“Lorenzo has got his own little personality now. He’s definitely got a thing for nurses, he loves to stare at them.”

Nikky had a c-section in January at 36 weeks pregnant because Lorenzo’s head was growing so quickly but doctors told her the baby would not survive the birth because he was brain damaged.

But miraculously he survived, and although the 12-week-old needs to be tube fed and was unable to close his eyes for the first two weeks of his life he has amazed his parents by now closing his eyes independently and breathing on his own.

There is no cure for severe hydrocephalus, but doctors say that the swelling around Lorenzo’s head will reduce in time as a shunt drains the fluid.

During Nikky’s pregnancy, Lorenzo was also diagnosed with severe ventriculomegaly, enlargement of the ventricles of the brain, which caused part of his brain to rupture.

After the birth, an MRI scan showed Lorenzo barely has any brain at all, with a cyst in the middle of the brain matter he does have, and is being kept alive by his brain stem.

Lorenzo also has a colostomy bag because was born without an anus.

Nikky said: “We had a planned c-section at 36 weeks because Lorenzo’s head was getting bigger and bigger so quickly.

“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.”

Lorenzo had a permanent shunt inserted into his head at two weeks old which drains the fluid from his brain down into his stomach.

Nikky and Fernando don’t know how the condition will affect their son long term but describe him as their miracle for even surviving birth.

Nikky said: “We knew we had a lot to learn when we had Lorenzo because he’ll be on medication for life but we’ve basically learnt everything now.

“We’re just taking it day by day and we’ll figure it out when he reaches his milestones.

“He’s brilliant.”

The couple have set up a fundraising page as Fernando was forced to take a break from his job at a supermarket to care for their other five children while Nikky stayed with Lorenzo at the hospital.

He 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.”


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