The little lad branded a monster
My boy, now 6, knows I'll always be there for him
Thursday 7th June 2007
The woman in the park came over and tapped me on the shoulder.
'Please can you take off your son's mask,' she demanded. 'He's really scaring my daughter.'
My 18-month-old old son, Hunter, was tearing around after a ball. I bent down and ruffled his red hair.
'It's not a mask. It's his face,' I said.
She looked at me in horror.
It was hurtful, but I was used to people thinking my son was wearing a goblin mask. Hunter was born with tumours growing over half his face and neck. He has a swollen, lopsided head that makes children stare and adults flinch. The weird thing is, I know how they feel.
Nothing prepared me for the way Hunter looked when he was born. I had an emergency Caesarean because, after 21 hours of labour, he got stuck. As I lay there at St Vincent's Catholic Medical Center in Manhattan, New York, my husband, Eric, 30, held my hand. We waited to hear our new baby's first cry.
But then there was silence.
'What's wrong?' I demanded.
The doctors didn't say a word.
'Kiss your baby,' the midwife said, flashing a tiny bundle in front of me.
Before I'd had a chance to look at him, he was whisked away.
'I'm afraid your son has severe facial deformities,' a doctor told me.
I was too shocked to speak.
Eric went to find out what was happening while I waited, frantic with worry.
When he finally came back, his face was grey.
'How does he look?' I asked.
Eric was silent.
'Is he normal?' I pleaded.
I could tell he was struggling to find the right words.
'He's missing an ear and his eyes aren't right…' he began.
I didn't want to know any more.
We called our son Hunter, which was my maiden name. The doctors were worried that
I might not be able to cope, so at first, I wasn't allowed to see him, but Eric gave me hourly updates. Finally, two days later, I managed to persuade a nurse to take me down to the special care baby unit. All alone, surrounded by the equipment, I looked into my
baby's cot — and froze. I couldn't believe what I saw.
In place of a nose, Hunter had two holes going straight into his face, the left side of his head was bloated and droopy, and his little body was wriggling. He looked like an alien. He's not ours, I thought. They've made a mistake. Our baby had been fine — the scans had shown me that.
Seeing my shock, the nurse said: 'Sometimes scans don't pick up abnormalities like these.'
For nine months, I'd looked forward to feeling a surge of love when I saw my first child. Instead I just felt numb. I sobbed until my body rocked. Could I really love this little boy?
Over the next few days, Eric and I kept a vigil at Hunter's bedside. Several times a day, his heart stopped until one of the nurses smacked him on the back. The doctors couldn't give us
any explanation.
'We're not sure what's caused this,' the doctor told us. 'All we can say is that your son will be blind, deaf and retarded.'
Even worse, each time his heart stopped, he was more likely to be brain-damaged.
'I don't want him to end up a vegetable,' I sobbed to Eric.
So we decided to sign a 'Do Not Resuscitate' form which was put at his bedside. Amazingly, from then on Hunter's heart never stopped.
'It's as if he knows it mustn't happen again,' Eric said.
We found out the tumours were pressing on his airway, which meant he wouldn't survive without a feeding tube into his stomach and a tracheotomy to help him breathe.
As the weeks passed and I watched our little boy fighting, I got over the initial shock and
started to bond with him. He was only tiny, but he already had a big character. In fact, the nurses had nicknamed him 'The Hulk' because he was so strong. One night, as I rocked him
to sleep in my arms, I gazed down at him. Of course, at first all I saw were his awful deformities, but this was my little boy and, suddenly, I had an overwhelming feeling of love.
We'd been told he was blind, but I was convinced he could see me. So when he was 6 weeks old, I brought in a Winnie the Pooh mobile that had been hanging over his empty cot at our home. I wound it up and watched as Hunter's eyes followed Tigger.
'Look, look!' I cried.
The doctors didn't want to raise our hopes, but to us, it was proof he could see.
From then on, Hunter developed just like any other baby. By five months, he'd hit all the right milestones — he was rolling over, sitting up and pulling on my hair with his little fingers. Eric and I learned how to work his equipment and finally, when Hunter was 14 months old, we brought him home.
But now, as I wheeled him back to our apartment from the park, I had my first taste of the reality of living with my little boy. Wherever we went, people stared. When he was 19 months old, Hunter had an operation to remove the tumours, but it didn't work.
'They were too close to the blood vessels in his face,' the surgeon explained to us later.
They analysed the tumour tissue and thought he was suffering from neurofibromatosis, the same disease that the Elephant Man, Joseph Merrick, had. The tumours would continue developing, and we could only hope they didn't grow on vital organs that would put
his life at risk.
For us, it was heartbreaking, but Hunter carried on fighting. Even though the doctors had told us he was deaf, his hearing started to improve.He could understand us when he wore his hearing aid and we all learned sign language, too
At 2, Hunter started at a special school for the deaf. Some of the little girls were scared of him at first, but Hunter soon won them over.
'Why do people stare at me and say my face is funny?' he asked, on the way home one day.
'Because they're silly,' I told him firmly. 'They're the ones with the problem, not you.'
In April, we went to watch him take part in a school play. As he sang along to the chorus, I felt tears welling up.
'They never thought he'd do anything,' I whispered to Eric.
Eric and I would like to have more children, although it hasn't happened yet. For now, we've got our hands full with Hunter. My son is 6 now and he's such a happy little thing. He loves dressing up in his favourite Spider-Man costume and leaping around on the furniture.
In March this year, he had the first of three operations to help him to look more normal. Even though he's not bothered by his appearance now, we know that will change as he gets older. The surgeons plan to level out his eyes, rebuild his eye sockets, form a nose and cut away the tumours.
We're pinning everything on this surgery. We love our son no matter what, but we'd be so happy if he could walk down the street without people staring. Now, that dream may become
a reality at last.
Read other stories of immense bravery exclusive to Pick Me Up:
Tortured on the way to work
The world's smallest mum