Sudden Infant Death Syndrome, also known as cot death, claims the lives of around 300 babies every year. One bereaved mother talked to Alexa Copeland about how she coped with its devastating effects.

“EVERY parent’s worst nightmare” is a phrase that is bandied about all too often. From forgetting to pack an essential distraction toy on a long journey, to a toddler tantrum in a busy supermarket, parents have challenges to face and battles to fight every day.

But mum-of-four Stephanie Stoker and her husband Shaun have experienced an agony to put the word ‘nightmare’ into chilling perspective. They lost their fifth child, Leo, to Sudden Infant Death Syndrome (SIDS) when he was just six-weeks-old. And speaking at the time of what would be his first birthday, a brave Stephanie said that she wanted people to know their story so that the unsettling mystery around the subject of SIDS could be banished.

Stephanie also wants to raise awareness and money for charities that support parents and fund research into the syndrome which leaves behind so much grief and so many unanswered questions.

“He was a fit and healthy baby, the doctors said that he was a credit to us,” says Stephanie, who recalls the heart-breaking moment Leo passed away.

It was October last year and Stephanie had given her baby his final bottle before he settled down to sleep. She awoke around 5am and said she remembered being surprised that Leo had slept through the night. Shaun went to check on him and it was then that the couple realised something was horribly wrong.

“His nose was bleeding and there was no response,” says Stephanie. “Shaun ran downstairs with him and we rang the ambulance people who gave us instructions over the phone, Shaun was trying to resuscitate him.”

The police, ambulance and air ambulance all arrived at the family’s Darlington home and it was whilst travelling to the town’s Memorial Hospital that Stephanie was given the devastating news that her baby son had died.

“I thought they were lying to me,” she says. “Then when I saw Leo in the hospital I had so much anger towards them (medical staff), I was saying things like why are you in this job if you can’t even save him?” The following day Leo was transferred to Newcastle for an autopsy where his cause of death was given as Sudden Infant Death Syndrome.

That diagnosis offered no comfort to the Stokers. “You are constantly blaming yourself,” says Stephanie. “What if I had woken up a bit sooner, could I have saved him?

“Everything like that goes through your mind.

“There isn’t a day that I don’t think about him, I think about him every minute; it has changed me as a person. It is like a shutdown, like you are here but not really here, which is a really weird feeling. It is like something has been ripped out of you and it can never be put back.”

Stephanie admits that she found it difficult to let go of Leo. She is grateful to the Darlington funeral home that looked after his tiny body for two weeks until she could bring herself to organise and attend his funeral. And she is also grateful to her close friends, family and volunteers at The Lullaby Trust who helped her through some dark days. Among other services, the Lullaby Trust offers a confidential helpline for bereaved parents and Stephanie says that knowing they were on the other end of the phone was a great support and comfort. In time, she picked herself back up again. “I told myself that me moping isn’t going to bring Leo back, I need to go on and make them proud and be strong,” she said. Stephanie found herself a job as a support worker for people with learning difficulties and continued to pour her energies into to her four other children, Zach, now aged 22-months, Rebecca, three, Joe 11 and Emily, 17.

And she has also put her efforts into fundraising for The Lullaby Trust, organising a sponsored walk and fun day in Darlington which raised around £600 for the charity.

Stephanie is now carrying on with life without Leo except in her heart, but admits that despite having experienced the grief of SIDS first-hand, she is at a loss to offer advice to other parents going through it themselves. “There is nothing you can say, it can’t make that baby come back,” she says. “No matter how you lay the baby or feed them, this can still happen. There’s no answer. That is why I want to raise some money to help them put more effort into finding reasons why SIDS happens because it is such an insufferable thing when your baby is taken from you.”