A baby who was born with a swollen head due to a rare condition that also severely affected his brain is continuing to defy doctors, say his parents.

Baby Lorenzo developed severe hydrocephalus while in the womb, meaning fluid built up inside his head and caused part of his brain to be damaged, leaving him with significant neurological challenges.

His parents, Fernando Pontone and Nichaela Lewis, from Liversedge, were offered the option of ending the pregnancy at 20 weeks when Lorenzo’s condition was revealed at a routine scan.

Nichaela, 28, recalled: “The doctor said there was a good chance he could be still-born or be blind, deaf, have seizures constantly or not move.”

Fernando said: “To me it sounded like the first thing they said to do was end the pregnancy.

“We talked about it for a couple of days. There was a lot of crying.”

The couple, who have five children at home aged 10 months to 12, eventually took the decision to continue with the pregnancy.

“In the end, we just didn’t think it was fair,” explained Fernando. “He was half way to being born. He had arms and legs and a face. We couldn’t give up on him.

“We just didn’t think it could happen to us. The other five kids were all not complicated.”

Later, an MRI scan confirmed Lorenzo had severe hydrocephalus and revealed a cyst in the middle of his brain that could have caused further damage.

A C-section was scheduled at Leeds General Infirmary and on Wednesday January 8 Lorenzo arrived into the world.

Fernando said: “They took him out and rushed him straight to this little table, as it took a good few minutes to get him round.

“It felt like an eternity until we heard him cry and the tears of joy started.”

The doctors then discovered the added complication that Lorenzo had been born without an anus, so he underwent a colostomy within 10 hours of birth.

Just over a week later he went through four hours of brain surgery, which Fernando described as, “the hardest day of my life”.

“We just walked and walked around Leeds,” he remembered. “We got a coffee, couldn’t drink them.

“Then we ran back when we got the call to say he was OK.”

The couple have spent the weeks since Lorenzo’s birth taking it in turns to stay at a hospital-provided flat next to the LGI, while the other parent looks after their other five children at home in Liversedge.

“When I’m at home I want to be at the hospital and when I’m at the hospital I want to be at home,” said Nichaela.

Fernando agreed: “Life is incredibly difficult at the moment to be fair. It doesn’t feel like we’re a family right now.

“We are just taking it day by day but it is difficult.”

It is the moments when Lorenzo shows glimmers of joy that keep the couple going though.

Nichaela said: “He likes his face stroking and sometimes he smiles.

“Those moments mean loads. It brings me total happiness and joy. It makes me so proud of him for fighting.

“He’s proved a lot of doctors wrong so far. They said he would not be able to breathe on his own, they said he would have seizures. He hasn’t had any seizures since he was born.”

Fernando said: “He can look at you too. They say he is blind and deaf but I think he can do both, I can see it when he smiles.”

The couple have set up an online fundraiser with Go Fund Me to help with the costs supporting their family through an incredibly demanding time.

It had a target of £1,000, which they reached, and any money after that will be split between the neo-natal unit at the LGI and the Forget Me Not Hospice.

Nichaela explained that the staff at hospital have been “fantastic” and Forget Me Not have provided advice and visited Lorenzo in hospital.

The couple hope to move Lorenzo to the Huddersfield-based Hospice when he is discharged from hospital, as a halfway house before eventually bringing him home.

Source: examinerlive.co.uk