HOW MANY TIMES WILL I HAVE TO SAY GOODBYE?

My daughter Pauline leant over the pram, gently she lifted her tiny baby Vicky out, cuddled her close.

‘What are those tears for?’ she asked.

Vicky’s cries stopped as she gazed up at her mum.  My husband Gerald and me exchanged smiles.  Pauline made us so proud.

It was 1979 and Pauline was only 16.  Back then teenage pregnancies and single mothers were frowned upon.  But Pauline was a great mum.  Whenever Vicky cried she was there for her.  Got up with her at night.  Talked to her all day.

She never complained about missing out on fun with her friends.  Even when she was knee-deep in dirty nappies, she still managed to smile.

She was the talk of the village – but only in a good way. Friends and neighbours saw what a fantastic mum she was, despite her age.  I was so chuffed.

I watched her now, rocking Vicky gently.  But suddenly, her body seemed to fold in on itself.  She crumpled to the floor, Vicky still in her arms.

I stumbled from the settee, raced over to her.  Gerald was right beside me.  ‘Pauline!’ I cried.  She made a terrible gurgling noise.  The she fell silent.  Her brown eyes were wide and staring.  Her body limp.

‘Oh, God…she’s dead!’ Gerald gasped.

Our other kids burst into the room – Lynn, 15, Ian, 9, and Jon, 8 – wanting to know what was going on.  Gerald took them out, comforted them.

I prised Vicky from Pauline’s arms, stood rocking her as the ambulance men arrived, tried to resuscitate her. I couldn’t move.  Just stood there my head buzzing with questions.

What had happened?  How could she be dead?

Pauline had always been so healthy – hadn’t she?

Over the next dew days, we learned Pauline had had an undetected heart condition all her life.  We couldn’t have saved her.  I was shattered.

Vicky grew more like Pauline, with dark hair and brown eyes, and the same smile.  No-one could love her more than I did.  And though she was only 2 months old when Pauline died, I wanted to make sure Vicky would know all about her mum. 

I told her all about Pauline.  Every night before bed, Vicky kissed Pauline’s photo goodnight.  Pauline was never far from our thoughts.  But life goes on doesn’t it?

I watched Lynn, Ian and Jon grow older than their big sister had ever been.

Lynn had a baby boy, Matthew.  She was a single mum too.  But just like Pauline, she made us proud.  Was there for him every second of the day.

Ian and Jon grew up too, got married.  Even little Vicky met a man she loved, and we had our first great grandchild, Nathan.  I loved watching the kids grow.

Matthew loved swimming and mountain biking.  Despite suffering from the odd black out that doctors diagnosed as epilepsy, it didn’t stop him doing a thing.

He was 17 when he called me from Holland.  ‘I’ve done it, Nan!’ he yelled.  ‘I’ve just walked 100 miles for my Duke of Edinburgh award.’

He came home still buzzing with excitement.  It was such an achievement.  But three days later the phone rang.  It was Lynn.  ‘Oh Mum’ she sobbed.  ‘Matthew’s dead!’

There had been no sign, no clues.  He’d been riding his bike like he always did.  ‘It was just as if he fell asleep,’ she whispered.

A chill went through me.  This was too familiar.  Matthew was young, fit and healthy – just like Pauline.  Neither of them had known they were about to die.

I tried to comfort Lynn, but this was too much of a coincidence.  Something was wrong with our family.

Two weeks after Matthew died; a story on TV caught my attention.  It was about a man with Long QT Syndrome – a genetic heart condition where an electrical disturbance in the heart makes heartbeats irregular.  It has no symptoms.

‘I’ve got to do something,’ I told Gerald.  ‘I can’t go on wondering who might be next.’  Next day I called Royal Devon and Exeter Hospital’s Genetic Department.  I left a message with the consultant’s secretary telling her about my family tragedy.

I didn’t’ expect to hear back.  But, a few hours later the consultant called.  ‘I’d like you, Lynn, and Vicky to come to the hospital for tests.’ she said.

She asked us all kinds of questions about Pauline and Matthew’s deaths.  When she’d constructed a family history, she sent us for an ECG to monitor our heartbeats.

Finally, she gave is the diagnosis.  She didn’t know exactly what we had.  But she believed we had a genetic heart condition – one that could be fatal.  ‘It’s hereditary,’ she said.  ‘There’s a chance that these wont be the last deaths.’ 

Samples of our blood were sent away for more testing.  Then all we could do was sit and wait.  The months passed with no news.  I hoped that Lynn would begin to heal after losing Matthew.  But she slipped into depression.  As the first anniversary of Matthew’s death drew near, I decided to have a dinner at Jon’s to mark the occasion.  I thought it’d be a comfort to Lynn.

But on the day she called to say she wasn’t coming.  ‘I just want to be alone, Mum,’ she said.  We spent to day playing Monopoly and snap.  But, as the evening came, we saw headlights on the drive.  It was Lynn!

She came into the living room, gave Kinder eggs to the kids.  Then she turned to me ‘I’ve decided I have to try to move on,’ she said.  I hugged her tight.  At last she was ready to heal.  I went home feeling lighter than I had in months.  The phone rang in the early hours.  It was Lynn’s partner Paddy.  ‘Lynn’s dead!’ he cried.  ‘We were talking and she collapsed.  It was as if she just fell asleep.’  I heard the doctor’s words in my head.  These won’t be the last deaths…

My Lynn was only 38.  Too young to die.  We couldn’t believe we were saying goodbye to someone else with so much to live for.

I’m still determined to find out what’s wrong – for the children.  They deserve to live without a time bomb ticking inside them.  Doctors now believe we have Long QT, but it could be months before we find out for sure.

The charity CRY – Cardiac Risk in the Young – has been a godsend.  It’s given me so much information and if I have a bad day, I know I can call them.