Baby Lorenzo continues to defy the odds
PARENTS’ PRIDE AS NEWBORN SON BATTLES BRAIN DAMAGE CAUSED BY HYDROCEPHALUS
A BABY born with a swollen head due to a rare condition that crushed his brain is continuing to defy doctors, say his parents.
Lorenzo developed hydrocephalus in the womb, meaning fluid built up inside his head and caused part of his brain to rupture, leaving him with brain damage.
His parents, Fernando Pontone and Nichaela Lewis, from Liversedge, were offered the option to terminate the pregnancy at 20 weeks when the 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: “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, decided not to terminate.
“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 kill him. We just didn’t think it could happen to us. The other five kids were all not complicated.”
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 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 worst 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 the birth taking it in turns to stay at a hospital-provided flat next to the LGI, while the other parent looks after the other children.
“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 horrible 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 to help with supporting their family.
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 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 a Huddersfield-based hospice as a halfway house before bringing him home.
Nichaela has also created a Facebook group.
She said: “I want to raise awareness about hydrocephalus because I’ve spoken to a few mums that have had kids with it or similar brain conditions. I also want to show that doctors aren’t always right when they give you worst case situations.”
He likes his face stroking and sometimes
he smiles. Those moments mean loads.