Leanne Daniel’s emotional story about her son Jamie appears in THAT’S LIFE mag…
Leanne Daniel was thrilled to be expecting twins but at her scan she was given the devastating news that her baby son had a hole in his head and wasn’t expected to live.
However he did and Jamie has grown into an adorable little boy who has surpassed doctor’s expectations – from surviving to going to school.
You can read Leanne’s full story here…
By Alison Smith-Squire
Doctors told Leanne Daniel to take her baby home to die – but little Jamie was a fighter…
Lying on the bed, I lifted up my top to reveal my pregnant belly.
“I’m feel quite big already!” I said. And I wasn’t joking.
Although it was my first pregnancy and I was only three months gone, there was already a pretty big bump…
“Let’s get this baby up on the screen,” she said, tilting the monitor as she scanned my tummy.
I was 31 and never in a million years had I ever thought I’d even be pregnant.
The truth is I’d never even wanted kids. But now I was looking forward to a future as a single mum.
Shortly after I’d discovered I was pregnant, the man I’d been with for a few months and I broke up.
Of course I could have had an abortion – but I couldn’t go through with anything like that.
It had been an upsetting time. But I’d made my choice and now… here I was.
The sonographer seemed to be taking a while and then she smiled.
Moving the screen so I could see for myself, she pointed to the fuzzy black blobs.
“See these,” she said, “I’ve found two heads …you’re having twins!”
It was a bombshell and as I left the hospital I found myself both strangely excited by the prospect and terrified.
How on earth would I cope?
Thankfully my parents came to rescue. “Jim and I have been talking… why don’t you move in with us?” suggested my mum Shirley.
So I – or rather, we – did.
Over the next few weeks my tummy rapidly grew.
At my next scan at 20 weeks to my delight I discovered I was having a boy and a girl.
Then the babies began kicking.
Time went by. My tummy got even larger. Mum came with me as I waddled round the shops making big decisions such as which pushchair would be the best buy. And should the twins sleep in one cot or separate ones when they were born?
I was 31 weeks when I went for another scan. One of the twins was a bit smaller than the other and doctors were monitoring the growth.
So nothing prepared me for the shock that was to come.
For the first time, the woman doing the scan had a very serious look on her face.
“I think there’s a problem with one of the babies,” she said, “I need to get someone else to look at the picture.”
My stomach lurched.
It was the worse news possible.
“There’s something wrong with your baby’s head,” said the woman as she explained they were referring me to another consultant for more tests.
I felt my babies move – but I was stunned into a sickening silence as the reality sunk in.
My dad, Jim came with me as another scan quickly revealed something terrible.
There was a hole in one twin’s head. His brains were sticking out of it.
Doctors explained he had a rare condition known as an encephalocele, which meant the brain protruded through the skull between his eyes and his forehead.
“Your baby is very poorly,” explained the consultant, “he will die before birth…”
The best option, he added, was a termination. But this would involve injecting him so he’d die in the womb and delivering him dead…
The room spun with the news. But I clutched my tummy knowing I couldn’t kill my baby.
The next few weeks were so hard. Often I’d just lie in bed, holding my tummy – feeling both babies kicking – with tears streaming down my face.
Then at 34 weeks my waters suddenly broke. At hospital doctors decided as the babies were both lying in awkward positions, to do a caesarean.
Lucy was born first. A healthy 5Ib she was whisked off to special care as a precaution.
Then Jamie was born. I expected him to be dead – but to my surprise he gave a loud cry.
A nurse wrapped him in a blanket. “Do you want to see him?” she asked.
I nodded. But I was horrified because the hole seemed to take up all of his face…
As I was moved onto a ward, Jamie, just 2Ib 7oz, was tucked up in a cot next to me. ‘He’s unlikely to last the night,” said a midwife gently. She added there was no point in taking him to special care. With such a severe deformity he’d be unable to even feed.
But shortly after she’d gone Jamie began to cry.
Scooping him into my arms, I gave him a kiss. “There,” I said, “are you hungry?”
I gave him a bottle of milk – and to my surprise he guzzled the lot.
The next day doctors and nurses were surprised Jamie was still alive – but I carried on feeding him as usual.
“You’re still my baby,” I whispered cuddling him.
A week passed and Lucy was fine to go home.
Nurses gave me three options. I could leave Jamie to see out his days in a hospice, leave him in hospital or take him home to die.
There was no dilemma. By now I’d bonded with Jamie. I no longer even saw the hole in his face. To me he was my beautiful little boy. Leaving him behind was unthinkable.
However the next few months with twins – and Jamie needing round-the-clock care – took its toll.
Brain fluid constantly leaked from his hole and all the skin peeled off his face.
Taking him out was impossible because he looked so terrible. And I was exhausted – feeding him his bottles of milk took hours.
Yet despite what doctors expected, Jamie didn’t die. Instead he put on weight. And at four months – determined something must be done to help him – I went back to the consultant.
This time, impressed that Jamie had survived so long, the consultant discussed an operation to gently close the hole in his head.
“The problem – and why we didn’t do it before – is the operation is so dangerous, it could kill him,” he explained, “or it could leave him very disabled.”
But we had to take the risk. If he didn’t have the op, Jamie would eventually get an infection in the hole. If that happened he would die…
Kissing Jamie goodbye as he went to theatre was heartbreaking.
But seven hours later I got the news I’d longed for. Jamie was in intensive care …
Nervously I looked at his face – and, despite being covered in bandages, I was thrilled. With the hole closed, I could finally see how beautiful my baby son was. And when he opened his eyes and stared into mine with his usual knowing look, I knew he would be fine.
After seven weeks Jamie left hospital. He has since had further surgery to ensure the hole never opens up again – and an operation on his eyes to unblock the tear ducts.
Doctors had no idea whether Jamie would walk or talk. But by the age of three, Jamie was walking and now he’s talking.
In September last year Jamie started at a school for children with learning difficulties – but he’s coming on leaps and bounds.
He has loads of friends, adores football and playing on his iPad. I’m so glad I never gave up on Jamie. He’s already proved he can cope with whatever life throws at him and I’m just so proud of my adorable boy.”
Leanne Daniel, 35, from Nuneaton, Warwickshire.
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