The Lullaby Trust

“I learnt to start living again”

Nicky Wilson, 32 from Cheshire, explains how The Lullaby Trust helped her cope with her grief

For the first 12 weeks after bringing our baby boy Rhys home from hospital, life was perfect. I had had a textbook pregnancy and, following a quick labour, we were delighted to take Rhys home. He was in good health and feeding fine – there were no signs as to what was going to happen.

lullaby trust


But on 18 December 2003 – just one week before what would have been Rhys’s first Christmas – everything changed. My partner and I both had the day off to get everything ready for Christmas. He was napping on the sofa with Rhys sleeping peacefully on his chest. And as I listened to Rhys snoring, I drifted off too. I couldn’t have been asleep more than ten minutes, but as I opened my eyes I immediately noticed that Rhys wasn’t making any noise. I went over to pick him up and realised to my horror that he wasn’t breathing. Terrified, I woke my partner and we drove straight to the hospital with Rhys, which was two minutes away. I remember abandoning the car and screaming for help from the paramedics outside A&E, who came over and took Rhys straight to the resuscitation room.

I have no idea how long we were in the family room as we waited for updates on Rhys, it was all a complete blur. However, I will never forget the moment when the doctor came in and told us there was nothing they could do. I couldn’t understand and was in complete shock and confusion – Rhys had been a healthy baby. How could this have happened?

The doctor brought Rhys to us, all wrapped up in a blanket, and we spent an hour saying goodbye to him. It was heartbreaking seeing him just lying there with needles still in his legs from the adrenalin they had given him to try and kickstart his heart, and knowing this was the last time we would hold our beautiful baby boy.

Coming home from the hospital was awful. The police had to do an investigation and we had to attend a post-mortem at the family court because it was classed as suspicious since Rhys hadn’t been ill. We also had to endure the Christmas period, which should have been so special, but was now unbearable. My sister had just hada baby too, so for those few weeks before Rhys passed away we had been everywhere and done everything together, so she was also devastated. Wherever I went, I constantly felt like I’d forgotten something or that something was missing.

It was at the post-mortem in January that we were told Rhys had died from Sudden Death Syndrome, and we were given a Lullaby Trust leaflet. There were details about their helpline for bereaved parents and we decided to get in touch. From our first call, we found it a massive help being able to speak to people who knew what we were going through.

They encouraged us to talk about our feelings and not bottle things up; they also shared their own stories. Listening to them speak was like glimpsing a light at the end of the tunnel. We could see they were moving on with their lives and, although at the time it felt like our lives had ended, they gave us hope we could carry on and get to that place too.

The Lullaby Trust also supported me when I became pregnant again in December 2005 with my son Ben. Through their CONI (Care of Next Infant) schemeI was given extra scans, extra appointments, and a heart monitor that Ben wore until he was eight months old. They came out to train all of us how to do baby resuscitation, so in an emergency we would know what to do. This really helped put my mind at ease despite all the worry.

Of course I still get sad when I think about Rhys, but I also feel glad that we had him in our lives. Thanks to The Lullaby Trust’s help I am able look forward and celebrate life rather than mourning it.


The charity started in 1971 as the Foundation for the Study of Infant Deaths (FSID), relaunching as The Lullaby Trust in April 2003 in order to reach more families with
their expert advice.

It is the leading charity dedicated to reducing SIDS and supporting bereaved families across England, Wales and Northern Ireland.

The charity has so far invested over £11 million in SIDS research to help them understand where and when a baby is most at risk.

Since the charity formed there has been around a 70 per cent reduction in SIDS deaths in the UK.


The Lullaby Trust will spend the £51,325 raised in The Candis Big Give supporting bereaved families. The charity offers support and follow-up programmes for bereaved parents who go on to have another baby, and arrange days out for bereaved families to meet each other.


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