WHEN Nikky Pontone was told to terminate her baby – she was heartbroken.
Doctors had told the mum-of-six, 28, it was unlikely her little one would survive given he had a hugely swollen head and crushed skull due to a rare condition.
However, something inside Nikky told her her unborn son was a fighter – and she refused to abort him.
Hours later, she gave birth to little Lorenzo – and despite the odds, he miraculously survived.
And while he is currently battling brain damage, his mum believes it was “meant to be”.
Nikky and her partner Fernando, 33, from Huddersfield, West Yorks, are now sharing their story to urge other parents to trust their instincts.
Dad Fernando said: “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.”
Nikky and Fernando’s ordeal began when Lorenzo was diagnosed with severe hydrocephalus, a rare condition which causes fluid to build up in the skull and the brain to swell, at the 20-week scan.
The couple 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.
However, Nikky refused to abort Lorenzo – despite warnings he wouldn’t survive birth.
The stay-at-home mum 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.”
Doctors told us he was at high risk of being stillborn
Nikky Pontone
Nikky had a C-section in January at 36 weeks pregnant because Lorenzo’s head was growing so quickly.
And doctors continued to warn her that her baby would not survive the birth because he was brain damaged.
However, Lorenzo miraculously survived the birth.
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.
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 ten 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.
His dad 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.
What is hydrocephalus?
Congenital hydrocephalus is when a baby is born with excess fluid in their brain.
It can be caused by a condition such as spina bifida, or an infection the mother develops during pregnancy, such as mumps or rubella (German measles).
Many babies born with hydrocephalus have permanent brain damage.
This can cause several long-term complications, such as:
- Learning disabilities
- Speech problems
- Memory problems
- Short attention span
- Problems with organisational skills
- Vision problems, such as a squint and vision loss
- Problems with physical coordination
- Epilepsy
Hydrocephalus can usually be treated using a thin tube (shunt) that’s surgically implanted in the brain and drains away the excess fluid.
“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.”
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.
Despite this, his parents say the tot has enjoyed getting to know older siblings Koby, 12, Lily, ten, Thomas, eight, Bella, five and Gino, ten 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.
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