Doctors told me to leave my son to die - but he refused to let the hole in his head kill him
Bright future: Jamie loves life
Sunday people
As he plays in the sun, Jamie Daniel looks like any other five-year-old boy enjoying a spring day.
But for proud mum Leanne simply seeing him running around and laughing is a miracle.
Because Jamie was born with a hole in his forehead and his brains sticking out of his skull – and doctors didn’t expect him to survive the night.
Leanne told the Sunday People: “He never even went to intensive care.
“Heartbreakingly, he was put in a cot next to my bed and I was told to let nature take its course. It was devastating.
Twin
“The hole in his head was so large doctors believed it was the kindest way – and they sent him home with me to die.”
But they hadn’t bargained on Jamie’s incredible will to live.
For the brave 2lb 7oz boy – half the weight of the twin sister born two minutes before him – refused to give up on life.
And today, thanks to pioneering surgery, Jamie is a boisterous little boy who goes to school and loves his football.
His survival against all the odds owes much to the love of single mum Leanne, 35.
She said: “I never gave up. His appearance as a baby was shocking but he had such a personality I couldn’t help bond with him.”
Support worker Leanne hadn’t planned the pregnancy and split from her partner soon after finding out she was
expecting Jamie and his twin Lucy.
Then at 31 weeks she had a scan – and it revealed a problem with Jamie.
At first doctors thought he had a cyst on his face.
But further tests found an encephalo-cele, a rare defect where part of the brain sticks out of the skull.
In Jamie, it was between his eyes.
The exact cause is unknown and 80 per cent of cases are fatal. Leanne said: “When the consultant told me he’d most likely be born dead or at best have severe brain-damage I burst into tears.
“Although I was past the 24-week abortion limit, I was offered a termination because the defect was so serious.
“This would have meant injecting Jamie in the womb with a drug to stop his heart and then carrying on with the pregnancy so Lucy would be born alive.
“But there was no way I could go through with it – I decided if he were going to die I’d rather he died naturally at birth.
“The next couple of weeks were so hard – I’d lie in bed feeling both babies kicking with tears streaming down my face.” At 34 weeks, Leanne’s waters broke and she had a Caesarean at a hospital near her home in Nuneaton, Cheshire.
She said: “Lucy came first and two minutes later I had Jamie.
“I expected the doctors to say he was dead but instead he gave a loud cry.
“A nurse showed him to me – I was horrified as the hole seemed to take up most of his face.”
Lucy, who weighed 5lb, was taken to a special care unit for monitoring. But Jamie was put in a cot next to his mum.
Leanne said: “A midwife told me it was likely that as the hole on Jamie’s face was an open wound he’d pass away in the night.
“She added it was unlikely Jamie would be able to feed. But I felt so sorry for him I gave him a cuddle. And he was obviously hungry so I gave him a bottle of milk.”
To her amazement the newborn guzzled the lot.
Leanne stayed in hospital for a week.
She said: “It sounds cruel but every day the doctors seemed surprised he was still alive.
“I think they truly believed the best thing for him was to pass away quietly.”
On the day she left, Leanne said she was given three choices: “Leave him to see out the rest of his days in a hospice, leave him in hospital or bring him home to die.
“But by now I’d bonded with Jamie – he was my son and it was as if I no longer saw the hole.
“All I could see was my beautiful baby boy, Lucy’s adorable brother. The thought of leaving him behind was unthinkable. At least he would die with his mum at his side.”
But the following months took their toll.
Leanne said: “His brain-fluid constantly leaked through the hole and all the skin peeled
off his face.
“Taking him out was impossible because he looked so terrible and feeding Jamie his bottles of milk took hours.”
Yet despite everything, Jamie put on weight – and even began to smile.
And at four months Leanne took him back to see the consultant.
This time, impressed that Jamie seemed to be flourishing, the doctor discussed having a pioneering seven-hour operation to ease his brains back into his skull and close the hole.
Leanne said: “The problem – and why they hadn’t attempted the surgery before – was that it was so dangerous.
“It could kill him or he could be left severely brain-damaged.
“But because the hole in his head was open he couldn’t go on like he was – eventually he’d get an infection and die. So agonisingly I agreed.”
The op was a success. Leanne said: “When Jamie opened his eyes and looked at me with his usual knowing look, I knew I’d made the right decision.”
Jamie had to spend seven weeks in hospital.
Since then he’s needed another op to make sure the hole is sealed for good and he’s had eye surgery to unblock his tear-ducts.
Leanne said: “When he was a baby doctors had no idea whether he’d walk or talk. But by the time he was three he was walking and he is now talking.”
Last September Jamie, who is still small for his age, started at a school for children with learning difficulties – and he’s coming on in leaps and bounds. Leanne said: “He adores football, playing on his iPad and he has so many friends.
“With such determination to beat all the odds, I know Jamie’s future is bright.
“He’s already proved he can cope with whatever life throws at him. I’m so proud of him.”
Foetal expert Dr Bryan Beattie, of Cardiff’s University Hospital of Wales, said: “It’s remarkable this little boy has done so well.”
But for proud mum Leanne simply seeing him running around and laughing is a miracle.
Because Jamie was born with a hole in his forehead and his brains sticking out of his skull – and doctors didn’t expect him to survive the night.
Leanne told the Sunday People: “He never even went to intensive care.
“Heartbreakingly, he was put in a cot next to my bed and I was told to let nature take its course. It was devastating.
Twin
“The hole in his head was so large doctors believed it was the kindest way – and they sent him home with me to die.”
But they hadn’t bargained on Jamie’s incredible will to live.
For the brave 2lb 7oz boy – half the weight of the twin sister born two minutes before him – refused to give up on life.
And today, thanks to pioneering surgery, Jamie is a boisterous little boy who goes to school and loves his football.
His survival against all the odds owes much to the love of single mum Leanne, 35.
She said: “I never gave up. His appearance as a baby was shocking but he had such a personality I couldn’t help bond with him.”
Support worker Leanne hadn’t planned the pregnancy and split from her partner soon after finding out she was
expecting Jamie and his twin Lucy.
Then at 31 weeks she had a scan – and it revealed a problem with Jamie.
At first doctors thought he had a cyst on his face.
But further tests found an encephalo-cele, a rare defect where part of the brain sticks out of the skull.
In Jamie, it was between his eyes.
The exact cause is unknown and 80 per cent of cases are fatal. Leanne said: “When the consultant told me he’d most likely be born dead or at best have severe brain-damage I burst into tears.
“Although I was past the 24-week abortion limit, I was offered a termination because the defect was so serious.
“This would have meant injecting Jamie in the womb with a drug to stop his heart and then carrying on with the pregnancy so Lucy would be born alive.
“But there was no way I could go through with it – I decided if he were going to die I’d rather he died naturally at birth.
“The next couple of weeks were so hard – I’d lie in bed feeling both babies kicking with tears streaming down my face.” At 34 weeks, Leanne’s waters broke and she had a Caesarean at a hospital near her home in Nuneaton, Cheshire.
She said: “Lucy came first and two minutes later I had Jamie.
“I expected the doctors to say he was dead but instead he gave a loud cry.
“A nurse showed him to me – I was horrified as the hole seemed to take up most of his face.”
Lucy, who weighed 5lb, was taken to a special care unit for monitoring. But Jamie was put in a cot next to his mum.
Leanne said: “A midwife told me it was likely that as the hole on Jamie’s face was an open wound he’d pass away in the night.
“She added it was unlikely Jamie would be able to feed. But I felt so sorry for him I gave him a cuddle. And he was obviously hungry so I gave him a bottle of milk.”
To her amazement the newborn guzzled the lot.
Leanne stayed in hospital for a week.
She said: “It sounds cruel but every day the doctors seemed surprised he was still alive.
“I think they truly believed the best thing for him was to pass away quietly.”
On the day she left, Leanne said she was given three choices: “Leave him to see out the rest of his days in a hospice, leave him in hospital or bring him home to die.
“But by now I’d bonded with Jamie – he was my son and it was as if I no longer saw the hole.
“All I could see was my beautiful baby boy, Lucy’s adorable brother. The thought of leaving him behind was unthinkable. At least he would die with his mum at his side.”
But the following months took their toll.
Leanne said: “His brain-fluid constantly leaked through the hole and all the skin peeled
off his face.
“Taking him out was impossible because he looked so terrible and feeding Jamie his bottles of milk took hours.”
Yet despite everything, Jamie put on weight – and even began to smile.
And at four months Leanne took him back to see the consultant.
This time, impressed that Jamie seemed to be flourishing, the doctor discussed having a pioneering seven-hour operation to ease his brains back into his skull and close the hole.
Leanne said: “The problem – and why they hadn’t attempted the surgery before – was that it was so dangerous.
“It could kill him or he could be left severely brain-damaged.
“But because the hole in his head was open he couldn’t go on like he was – eventually he’d get an infection and die. So agonisingly I agreed.”
The op was a success. Leanne said: “When Jamie opened his eyes and looked at me with his usual knowing look, I knew I’d made the right decision.”
Jamie had to spend seven weeks in hospital.
Since then he’s needed another op to make sure the hole is sealed for good and he’s had eye surgery to unblock his tear-ducts.
Leanne said: “When he was a baby doctors had no idea whether he’d walk or talk. But by the time he was three he was walking and he is now talking.”
Last September Jamie, who is still small for his age, started at a school for children with learning difficulties – and he’s coming on in leaps and bounds. Leanne said: “He adores football, playing on his iPad and he has so many friends.
“With such determination to beat all the odds, I know Jamie’s future is bright.
“He’s already proved he can cope with whatever life throws at him. I’m so proud of him.”
Foetal expert Dr Bryan Beattie, of Cardiff’s University Hospital of Wales, said: “It’s remarkable this little boy has done so well.”
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