When a genetic condition took the life of his wife Chantel, 23, Simon Robson, 27, was distraught.  Now he doesn't know what the future holds...

Looking at my little boy tearing around the garden, kicking a football and giggling, my heart swells with love for him.  Running up to me, he looks up at me with the same stunning blue eyes as his mum.  “Drink, Dad, drink” he demands.  Laughing, I scoop him up and smother him with kisses, cherishing every moment with him.  Since his birth two years ago, I’ve been living in fear that I’ll lose him in the same tragic way that I lost his mum Chantel.  And I don’t know how I’ll cope if that happens…

Chantel and I met at school in Woodkirk, West Yorkshire.  She was gorgeous with beautiful blonde hair and a cheeky grin.  I liked her the minute I met her. 

Six years later, we bought our own house together in nearby Dewsbury and started planning our wedding immediately. 

But then tragedy struck in 1999, when Chantel’s little sister Rachel, 20, died suddenly in her sleep.  Chantel was devastated.  Her grandparents had raised them both after their mum, Janice, had died suddenly a few years earlier. 

"I can’t believe it’s happened again,” Chantel sobbed.  Doctors were worried that there was a pattern forming.  "It’s possible there’s a genetic condition in your family that causes the heart to suddenly stop,” they said.  It was known as adult sudden death syndrome, but neither of us had heard of it before. 

We were horrified.  The only way we would know was by testing her DNA for the gene.  But the test wasn’t available in this country. 

So Chantel was offered a different test, an electrocardiogram (ECG) where electrodes were attached to her arms, legs and chest to monitor the rate of her heart.  If her heart rate fell within a certain bracket, it was thought she’d be OK.  She was also given a brain scan. 

“What about our children?” she asked.  Chantel desperately wanted a family.  She had already suffered three miscarriages.  But if she had the deadly gene there was the possibility she could pass it on to our children. 

I squeezed her hand as we went back for the ECG results.  “Your heart is working normally,” the specialist said.  We were so relieved.  Now we could get on with our lives. 

In July 2000 we got married in front of 80 of our friends and family.  It was a fantastic day.  Then, just two months into married life, Chantel found out she was pregnant.  It was exciting, but also frightening because of her previous miscarriages.  She immediately started hormone injections to ensure her body wouldn’t reject the baby and this time her pregnancy went smoothly. 

The following April, I was with her as she gave birth to our little boy, Eliot, after a 12-hour labour.  “I just wish Mum and Rachel were here to see him,” Chantel said as she held him. 

He was perfect, but she was still worried about his health.  “I want the doctors to test Eliot’s heart,” she decided.  So our baby had an ECG test when he was just three days old. 

The results came back clear, so we took our son home and Chantel took to being a mum straightaway. 

But just 10 weeks later, I arrived home from work one evening to see the curtains were still drawn from that morning.  I’d left home at around 6am, but the post was still on the mat and I could hear Eliot crying upstairs. 

I knew something was terribly wrong as I climbed the stairs to the bedroom.  “Chantel,” I called out, but there was no reply.  As I turned the corner I saw Eliot in his cot.  Then I saw Chantel in the same position she’d been in that morning.  I shook her, but she wouldn’t wake up. 

“Chantel!” I cried.  “Talk to me!”  I dialled 999 and then gave her mouth-to-mouth.  But when the paramedics arrived they told me she had been dead for several hours. 

I was devastated.  Chantel had seemed so healthy and the ECG tests had come back clear.  During the following days, I immersed myself in looking after Eliot.  I just went on autopilot. 

A week later I held Eliot in my arms at Chantel’s funeral.  It was heartbreaking and little Eliot didn’t have a clue he was saying goodbye.  The inquest found Chantel had died of natural causes just like her sister, but this time there was a probable cause of sudden death syndrome. 

Both sets of families were a great help and friends chipped in.  I stopped working and spent every minute with Eliot.  But if Chantel had died of sudden death syndrome, could my son do, too? 

Prompted by my concerns, doctors arranged to send Chantel’s DNA cells to geneticists in Denmark to find the problem gene before putting Eliot through the whole process.  Every night I would put him to bed, worried he wouldn’t wake up.  The slightest change in his breathing would send me into a panic. 

We had to wait 18 months for the results.  Eliot was walking and gurgling his first words when the results came back saying Chantel did have the problem gene.  “Now we can look for the same type in Eliot,” the doctor said. 

We’re still waiting for Eliot’s tests to come back.  I pray that he hasn’t got the same deadly gene as his mum, but even if he has, at least he can be treated.  If his heart is beating too slowly he can be put on medication and if it’s too quick, he can be fitted with a packmaker.  But if he has one fitted so young he will have to have it replaced possibly four or five times before he is 20. 

Chantel was a beautiful, wonderful woman, who loved being a mother.  I try my hardest to be a good dad but nothing can bring Eliot’s mum back. 

Four months after losing Chantel I went out for a drink one night and got talking to Michelle.  We clicked and started dating.  When Chantel was worried about her long-term future, she told me if anything happened she wanted me to move on.  “I don’t want you being miserable and affecting Eliot,” she would say.  “Get on with our life and meet someone else.” 

Michelle has been wonderful and is so good with Eliot, now a bouncing two-year-old.  One day I’ll tell him all about his mummy, but until then, I just want to focus on building the best future possible for him. 

For support or information on sudden death syndrome in young people, contact CRY, tel: 01737 363222 or e-mail cry@c-r-y.org.uk