A four-week-old baby born with a hugely swollen head and crushed skull 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 rare condition which causes fluid to build up in the skull and the brain to swell, at mum Nikky Lewis' 20-week scan.
Nikky, 28, and partner Fernando Pontone, 33, were offered a termination right up to full term as there was a high chance Lorenzo would be born deaf, blind, unable to move and prone to seizures.
But despite the tiny tot battling brain damage, mum-of-six Nikky believes Lorenzo was 'meant to be' and said he is already proving medics wrong by breathing on his own.
Stay-at-home mum Nikky, from Huddersfield, West Yorks, 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.”
Fernando added: “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.”
“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.”
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 four-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.
And the tot has enjoyed getting to know older siblings Koby, 12, Lily, 10, Thomas, 8, Bella, 5 and Gino, 10 months.
Nikky 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 as Fernando has been forced to take a break from his job at a supermarket to care for their other five children and the pair 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.”
Source: Magazine Features
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