'Our Story as Published':

Dear Jack and Samuel…

It should have been a perfect day, Jack.  Your Daddy, Sophie, Ben and I had arrived at the hospital for your 20-week scan.  We were so excited.  Couldn’t wait to see you.  The sonographer rubbed cold jelly on my tummy.  Suddenly, there you were on the monitor.  Little legs kicking, hand waving.  But then…

“I’d like to get a second opinion”, the sonographer said.  She left the room.  Left us frightened and confused.  When she came back, she explained what she’d seen.  “Your baby’s kidneys look bright on the scan”.  She didn’t know what this meant.  We had to see a specialist a few days later.  “Is everything OK, Mummy?” Sophie, then 9, asked.  What could I say?  I didn’t know.

For days your Daddy and I prayed that the specialist would tell us we had nothing to worry about.  He didn’t.  “Your baby has kidney failure”, he said.  He explained that your tiny kidneys were full of cysts, Jack.  They were being destroyed more and more each day.  “Can’t he have a transplant?” I asked.  “It probably wouldn’t work”, he said.  “If your baby survives in the womb, he won’t live long after the birth.”

We had to see another specialist in London.  Maybe he’d tell us that the others had been wrong.  But he told us that you had ARPKD – Autosomal Recessive Polycystic Kidney Disease. 

I scoured the Internet for any information.  We learned that the more common name for this disease is Potter’s Syndrome.  It occurs in one in 40,000 pregnancies.  I wrote hundreds of e-mails to professors all over the world, searching for a cure.  They all agree one thing – there is no cure.

I was 25 weeks pregnant when your kidneys failed completely.  It meant that they weren’t producing any amniotic fluid.  It should have surrounded you in the womb; protected you, helped your lungs develop.  Without that fluid, we knew you wouldn’t survive.  But it was so hard to imagine that you poorly when I felt you wriggling in me every day. 

But we had to prepare for the worst.  While other parents-to-be were buying cots and prams, we were choosing your casket – tiny and wooden with teddies painted on the sides.

We arranged your funeral service, talked to the vicar, chose the hymns.  We only left one thing until after the birth – the little trinket box to put your ashes in.  We couldn’t face that – seemed too final somehow and we still hoped that we’d never have to use it.

A few weeks later, I went into labour.  We’d decided that if you breathed, then we’d let the doctors attempt resuscitation.  I spent 13 hours in labour with you.  Kept my eyes shut the whole time.  I didn’t want to see anybody.  Just wanted to hear your cry.  But when you arrived there was silence.  “He’s trying to breathe,” the doctor said.  “We’ll try to resuscitate.”  But they couldn’t even get the smallest of tubes into your lungs.    You never opened your eyes, but I imagined you had piercing blue ones – like Daddy, Sophie and Ben.  Our precious little Jack Andrew, you died in Daddy’s arms at 5 minutes old.

We took you home in your Moses Basket for two days, then to the Chapel Of Rest.  But we brought you home again the night before your funeral.  Your last night with us.

We cuddled you, Jack.  Talked to you, kissed you, dressed you in Winnie The Pooh clothes.  We had to give you a lifetime of love in just one night.  I wanted to run off and hide with you, so no-one could ever find us.  I couldn’t bear to let you go.  But I had to say goodbye…

It was so hard to cope with losing you, Jack.  But six months later, I had good news at last.  I was expecting another baby – that was you, darling Samuel.

I had a scan at 8 weeks, another one at 12.  You were doing fine.  But at 19 weeks, I went for a third scan.  This time I knew something was wrong.  “I’m so sorry,” the doctor said, “it looks as though this baby has the same kidney disease.”

No!

I ran from the room, tears almost blinding me.  Didn’t want to hear any more.  It couldn’t be happening again. 

Your Daddy and I went up to London two days later to see a top professor.  He scanned me, then gently took my hand.  “I’m so sorry,” he said, “but it is the same disorder.”  We left London, desperate and confused.  Why us - again?

We told everyone close to us.  So many people said that the diagnosis must be wrong, that we must hope for a miracle.  But we knew there was no hope.

Your kidneys were just like your brother Jack’s.  Full of cysts.  They failed at 25 weeks, just like his.  There was no amniotic fluid to protect you.  Your little lungs couldn’t develop either.  You wouldn’t survive outside the womb.  But, oh Samuel, how you wriggled away inside me.  We treasured every second with you.  Because we knew that you were heaven bound the moment you were born.

We made the funeral arrangements once more.  We had a casket specially made for you.  Little and white with white silk lining.

Jack had been born breech – bottom first.  But you were the right way round inside me, so I’d be able to have you at home.

Early one cold February morning, I felt the first twinges of labour.  Your Daddy and I tried to be as normal as possible that day.  We played games with Sophie, 11, and Ben, 4.  Drank coffee.  I took a warm bath and talked to my wonderful midwives, Lisbeth, Bev and Julie.  They’d been there with Jack too.  Couldn’t believe this was happening again.

It was early afternoon when I knew it was time.  I went upstairs…

You cried so very, very hard when you arrived, Samuel Jack.  The midwives gave you to Daddy.  I could hear you both crying.  Then they handed you to me.  My little dark-haired baby. 

“Is he going to be OK?” I asked.  “He’s crying.  He’s beautiful.  He seems so… healthy.”  I looked from one midwives’ face to another.  But they shook their heads, tears in their eyes.

Sophie, Ben and your Nanna came upstairs to meet you.  Your cries grew softer, your breathing quiet.  You were leaving us.  Suddenly a bright light shone through the window, so bright it hurt my eyes.  Daddy wrapped his arms round us both and you died in my arms, just 30 minutes old.

We kept you at home with us for two days – in your Moses Basket, just as we had with Jack.  Then we said goodbye to you, as we had your brother.  Our hearts were torn apart the day we lost you, Jack.  And they were torn apart again, the day you, Samuel, followed your brother to Heaven.

Your time on earth was too short.  But one day, we’ll all be together again, and we can hold you in our arms forever.

Love Mummy and Daddy.