Parents of tiny Faith Martin were told she had the rare condition encephalocele - a neural tube defect affecting around one in 5,000 UK births
A miracle baby born with part of her brain outside her skull is thriving despite doctors giving her little hope for survival.
Tiny Faith Martin, now aged three months, was never expected to breathe on her own when born and doctors explained to her heartbroken parents that they wouldn’t intervene if she couldn’t.
It was during a 17-week pregnancy scan at Middlesbrough’s James Cook University Hospital her mum Jessica Williams, 20, and partner Aaron Martin, 21, were told that their baby girl had the rare condition encephalocele - a neural tube defect affecting around one in 5,000 UK births.
Encephalocele is described as a sac-like protrusion of the brain and the membranes that cover it through an opening in the skull.
It happens when the neural tube does not close completely during pregnancy.
Jessica, who is also mum to Logan, one, and lives in Whinney Banks, Middlesbrough, said: “I went for my first scan and they said that there was a problem.
“We didn’t know what to think and the consultant came to see us. I was in shock.
“They knew straight away that the skull hadn’t fused together properly and that there was a hole in the back of her skull.”
Because prospects for babies with this condition are often catastrophic - many not surviving and some left with lifelong brain damage and other neurological problems - many parents choose to terminate the pregnancy.
Jessica said: “The consultant said that he thought that she was going to be severely disabled.
“All along we were told it was the part of the brain that controlled breathing that was affected.
“We were told that most babies that they knew of had died from it.
“They said that a termination was completely up to us and did we want to go away and think about it.
“But if there was any chance at all then we wanted to give it to her.
“We never gave termination a thought.”
The pair met with a consultant at Newcastle’s Royal Victoria Infirmary (RVI) who offered the pair some hope.
Jessica said: “He said that he’d seen much bigger and see the baby be OK in the end.”
To avoid any damage to the protrusion Jessica had planned a Caesarean section birth.
However Jessica’s waters broke on October 13 and the C-section was brought forward. “She cried straight away - and a couple of minutes later there was another cry.
“The consultant said he was happy enough to let her be left with us on the ward. I always clung onto the hope that she would be OK.”
The pair were sent home with their new baby the day after with weekly visits to a nurse-led clinic planned.
Faith has a MRI scan four days after she was born. “It went from being the ‘breathing part’ of her brain to ‘a part’ of her brain,” says Jessica,
However the protrusion grew and by December it was 21cm in diameter from 6cm at birth.
Caring for her was difficult, says Jessica, as her protrusion was painful when touched.
Jessica said: “She was in a lot of pain and had to be put on her side.”
An operation was booked at Newcastle’s RVI for January 10 when she was three months old to remove the protrusion - which contained excess brain fluid and dead brain matter - and have a shunt fitted to redirect any further fluid build up to her stomach.
Faith now needs MRI scans every six months and checks to make sure she’s developing as expected.
Jessica said: “We came home and she’s been fine and she’s been doing everything at three months that she should be doing and she will lead a totally normal life.”
She added: “It proves that doctors can be wrong as this outcome just wasn’t an option for her.
“She’s quite a determined little thing. She’s our little miracle.”
A spokeswoman for South Tees Hospitals NHS Foundation Trust said: “We give women as much information as we possibly can to help them make informed choices and we will support them in every way possible, whatever they decide to do.”
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