Baby's brains bursting out!
Saturday 8th November 2008
It was so horrific, I was convinced there must be some mistake. But the look on the doctor's face told me there wasn't.
'I'm afraid your baby has a hole in its skull between its eyes,' he said. 'The brain has burst through and is sticking out.'
It was 20 December and I'd come to Birmingham's Women's Hospital for my 30-week scan. Just 10 weeks earlier, I'd found out I was carrying twins, a boy and a girl. My boyfriend, John, 28, and I had only been together three months when I'd fallen pregnant. We'd split up not long after, and with Mum and Dad's help, I'd started to get used to the idea of being a single mum. But five days earlier, I'd found out my little girl had a cyst on her brain. Now, as the neonatal professor struggled to meet my gaze, I felt sick. This wasn't a cyst. My baby's brain was bursting out of her skull.
'It's a rare condition called Encephalocele,' he added.
I sat there, numb, tears streaming down my face.
'Come on, Leanne,' my mum, Pat, 61, urged. 'Come home and rest.'
What else could I do? But back at my parents' house, I couldn't stop thinking about it.
A squishy lump of brain poking through my daughter's forehead. It made me heave, which then made me feel guilty. This was my baby, I should love her, regardless. I spent hours looking up the condition on the internet, but there seemed to be no reason for it. It was all I thought about until I went back to the hospital on 28 December for an MRI scan to see if both twins had the condition. As the consultant called me into his office, I was so scared, I couldn't speak.
'The scan has shown that your daughter's perfectly healthy,' he said.
'W-what?' I stammered.
They'd diagnosed the wrong twin.
It was my little boy whose brain was bursting out. As I lay in bed that night, I cried my heart out. Would my son survive? If he did, how would he ever lead a normal life? On 7 January this year, my paediatrician had some answers.
'Your son will probably die at birth or soon after,' he said gently. 'The best you can
hope for is for him to survive, but he will be mentally and physically disabled.'
The room started to spin. Inside, I was screaming. But I could barely muster a mumble.
'We recommend you terminate the pregnancy,' the paediatrician added. 'We'll give you a few
days to think about it.'
In the days that followed, I cried constantly as I tried to decide. How could I kill my little boy? But was it fair to bring such a poorly baby into the world? Four days later, the decision was made for me. I was watching Deal Or No Deal when my waters broke. The babies were on their way. We already knew the twins were in a breech position, so as soon as we arrived at the hospital, I was rushed down to theatre for a Caesarean. I lay on my back, staring at the screen, as the surgeon lifted my little girl, who I'd named Lucy, up in the air.
'She weighs 5lb,' the midwife smiled, before whisking her off to an incubator.
I held my breath until, two minutes later, a piercing scream echoed around the theatre.
'Jamie!' I gasped. 'He's alive.'
'Do you want to see him?' asked the surgeon. 'We've scored him nine out of 10 for his vital signs.'
I couldn't believe it.
But him being alive was one thing. What would he look like? The midwife held my son up.
Time stood still for a second. Then, my little boy came into focus. There, stuck to his forehead, was a lump of something which looked like a piece of liver, grey and wrinkled, about the size of an orange. Did I feel sick? Did it make me cringe and look away?
No. I knew I loved him, no matter what. But six weeks premature, he was much smaller than his sister, at 2lb 7oz. He was wrapped in a blanket and rushed to an incubator.
That night, his doctor spoke to me.
'We don't expect him to last the night,' he said. 'The wound on his head means he's vulnerable to infection.'
It just didn't make sense. The rest of him looked perfect. So I refused to give up.
'Come on, little man,' I prayed.
After giving Lucy her milk, I gently put the bottle to Jamie's mouth. His lips clasped it and he began to suckle. After that, I treated him just like his sister. Next morning, when I changed her nappy, I changed his, too. Doctors gave him paracetamol so he wasn't in pain, and as I cuddled him, I washed away the spinal fluid that trickled down his forehead.
A week later, I took him home.
'We can arrange further hospital care,' the consultant offered.
'No,' I said adamantly. 'I want my son to be with his mum until the end.'
But Jamie didn't die. He went from strength to strength, and by 16 weeks, he weighed 7lb.
In fact, in May, when he was 16 weeks old, the surgeon at Coventry University Hospital was so impressed by his progress, he wanted to operate.
'The brain on the outside of his skull is dead,' he said. 'I can chop it off.'
I knew it was risky, but I also knew that if we left it outside, there was stilla risk Jamie could die. So I agreed. Just less than two weeks later, I kissed him goodbye as he was taken down to theatre.For five unbearable hours, Mum and I paced up and down.Then, the surgeon appeared, a huge smile on his face.
'It was a success,' he grinned.
'Thank God!' I cried.
Jamie had a black eye and was covered in tubes, but where the mass had been, was a neat row of stitches.
'The part of brain I cut away was the decision-making part,' the surgeon explained. 'So aspects like breathing and feeding haven't been affected. In development terms, he's only six weeks behind Lucy.'
'That's brilliant,' I smiled, delighted.
Within two weeks, the wound had healed and I'd brought Jamie home. He'll need regular check-ups and no one knows for sure how he'll progress, but I'm staying positive. After all, he's got this far!