Lullaby Trust

“They were there when we needed them most”

Claire Coates, 39, reveals how the Lullaby Trust helped her and her husband Andrew, 38, have more children after they tragically suffered a sudden infant death

The instinct to protect your newborn child is incredibly strong – it’s almost overwhelming when it comes to your firstborn – we’d never experienced love like it. So when our son, Matthew, died at just three days old from no apparent cause, it was hard to describe our devastation.I remember wondering how I would ever find the strength to go on without him.

Matthew was very much a wanted baby. I had a normal pregnancy and I carried to term, although he was two weeks overdue. We expected a happy outcome and were given no reason to think otherwise. There were some complications at the birth and Matthew was born by emergency caesarean, but he was pronounced healthy so we had no cause to worry.

So, when at just three days old he died suddenly – it was a total shock. The situation was made so much worse by the fact that doctors could find no reason for his death.

Returning home without our baby, feeling such painful emptiness was indescribable. Family and friends were amazing, but I felt I needed to talk to someone who knew exactly how I was feeling. We had been given a pile of leaflets with information and advice, one of which was about the Lullaby Trust. So, about a week after Matthew’s death, I called them and they put me in touch with Jo, a befriender, who was at the end of the phone whenever I needed her. She was a volunteer who had also suffered with a sudden infant death and she encouraged me to just talk and talk. She understood exactly how I was feeling and I didn’t feel I had to hold back. In those darkest early days, talking to Jo took away the intense burden of grief I was carrying. Although you can’t hurry through the grieving process and everyone copes differently, it certainly helped me to know she was there.

Despite our devastation, we still desperately wanted a family and the following year I became pregnant again. Andrew and I were terrified of history repeating itself but the Lullaby Trust was with us the whole way, through its CONI – Care of the Next Infant – programme, which works in conjunction with the health visiting service. We had additional support through the use of monitors, charts and extra calls from the health visitor and were given a card to go straight to A&E if we needed to. It’s such a scary time for parents who have lost a child from sudden infant death syndrome (SIDS) but the help we received was invaluable.

Then, to our great joy, our daughter, Erin, was born in August 2012, healthy and without complications. She was joined two years later by a sister, Lucy, also thankfully healthy.

They’re four and two now and both so lovely – we count ourselves very lucky to have them. About 18 months ago I decided to become a Lullaby Trust befriender – I knew just how vital the support network is to the parents who have lost a child through SIDS. In order to do so I had to complete a course, which included a training day in London. We also meet yearly to update our training so people can be confident that when they do call

the helpline, the person at the other end of the phone is capable of offering correct advice and has up-to-date information about the Lullaby Trust and services available. I still find meeting up with the other befrienders cathartic, our common bond means we can be open and honest with each other and I always come away feeling a little lighter in myself.

Being a befriender is an honour; to have these people confide in you and open up to you about their deepest feelings – I do everything I can to help them when they call.

While the helpline is staffed during the day, volunteers man it in the evenings from 6-10pm. Anyone affected by SIDS can call us – grandparents, aunts and uncles, extended family and also friends of parents – sometimes they want advice on how to best support a loved one or a couple coping with a tragedy.

The Lullaby Trust also offers regional “Family Days” across England, Wales and Northern Ireland at a variety of venues, where bereaved families can enjoy time in relaxed surroundings, meet other families and spend time with befrienders, Lullaby staff and the support team. We’ve taken the girls along to a few and have always found it to be a really positive experience. There’s always time and space to think about the child you lost, too.

As a befriender at Family Days, bereaved families want to tell you about their own fundraising, what they’ve been up to since the last event, or maybe about their son or daughter who passed away. People who come along are often at different stages of their grief – families who have suffered a recent loss and those who may have lost a child 30 years ago. It’s also good to see families progress over a number of years and hear how their lives have changed for the better over time – it’s reassuring to see people coming through the other side and enjoying a happy family life. Family Days aren’t sad or daunting, there are a lot of fun things for families to do together but there are people on hand to talk with if they want to.”

THE FACTS – Lullaby Trust

  • Lullaby Trust offers support for anyone affected by sudden infant death syndrome (SIDS).
  • Lullaby Trust has spent over £11 million on over 265 research projects to identify the risk factors to SIDS.
  • Family Days are organised regionally every year across England, Wales and Northern Ireland and are held in venues where families can enjoy time in relaxed surroundings.
  • Since 1991 there has been a 70 per cent drop in the number SIDS deaths. The Lullaby Trust aims to halve this by 2020. Currently there are on average five families affected each week.
  • Visit lullabytrust.org.uk for more.

BIG GIVE UPDATE

Money raised will be used to run a national campaign to promote safer sleep practices to reduce the risk of sudden infant death syndrome (SIDS) and save more babies’ lives.

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