Unexplained Baby Deaths are at an All-Time Low – But the Fight Isn’t Over0
This article was produced with help from The Lullaby Trust.
If you’re a parent, you may have heard stories of families with a seemingly healthy baby dying without warning.
Such deaths are rare: recent data from the Office for National Statistics shows that unexplained baby deaths are now at an all-time low. But losing a baby or a young child and not knowing the cause of death is one of the most difficult experiences any family can face.
There’s more work to be done
There were 42% fewer cases of sudden infant death syndrome (SIDS) in 2017 than in 2004, and 82% fewer than in 1991. This drop is thanks in no small part to awareness raised about how to reduce the risk of SIDS by the charity, The Lullaby Trust.
However, on average four babies a week still die of SIDS. The charity is clear that there’s still plenty of work to be done to ensure the number of deaths continues to go down.
Speaking to the Guardian, The Lullaby Trust’s Chief Executive, Jenny Ward warned against complacency. “Without consistent access to safer sleep information for all families, increases in the number of deaths could occur.
“If all parents were made aware of how they can reduce the risk of SIDS, we would see a much more significant reduction in the number of babies dying,” she said.
What is The Lullaby Trust?
Founded in 1971 by bereaved grandmother Nancy Hunter-Gray, The Lullaby Trust was created to support families and raise awareness of sudden infant death syndrome. Today, the charity offers parents, families and professionals expert advice on safer sleeping for babies. It also helps bereaved families cope with their loss.
What is sudden infant death syndrome?
Sudden infant death syndrome is the unexplained, unexpected and sudden death of a seemingly healthy baby. It used to be referred to as ‘cot death’ because some of these deaths happen while babies are sleeping in their cot, but babies can die from SIDS anywhere they fall asleep. While premature and underweight babies are particularly at risk, the cause is unknown.
Many parents are aware of SIDS, but not everyone knows that the risk can be lowered with a few simple precautions. These include following safer sleep practices and avoiding exposure to tobacco during pregnancy and after birth.
What help is available for bereaved parents?
As well as raising awareness, The Lullaby Trust does a lot to support the families affected by the loss of a baby or young child. A free bereavement helpline is available at 0808 802 6868, and the team also offer online support through email exchanges and a closed Facebook bereavement support group. The Lullaby Trust helps organise family days out, as well.
Ongoing, longer-term help is also offered through the charity’s Befriender program. Through The Lullaby Trust, bereaved family members can receive support from someone who has also suffered the loss of a child, grandchild or sibling.
“Being a Befriender and supporting others when they need it helps some meaning to come from what happened to us, and I’m always honoured that people share their stories with me,” says Robert, whose daughter Sophia died from SIDS in 2012. He is one of many volunteers who give their time to help The Lullaby Trust.
How can I support The Lullaby Trust?
The Lullaby Trust does not receive any government funding. Instead, it relies on donations and gifts through wills to fund its life-saving work.
If you’d like to help The Lullaby Trust by leaving the charity something in your will, it’s incredibly easy to do here on Beyond. In just 15 minutes, you can make a legally binding will online from home. Simply click here to start making a difference.
The Lullaby Trust has helped reduce sudden and unexpected infant deaths in the UK by 82% since their very first ‘Back to Sleep’ campaign in 1991. To find out more about their work or make a donation,visit their website.
In our Your Stories series, people who have lost a loved one share their unique perspective through essays, poetry and artwork. One year ago, Rachel Brougham’s husband Colin died in a cycling accident at just 39. Here, she talks about life, love — and dating — as a young widow.
As I walk down the sidewalk, the sound repeats itself behind me. There’s a stomp, a crunch and then laughter. Sometimes I hear, “Ooh, that was a good one,” or “That’s a big one right there!” Then it starts all over again.
It’s March in Minneapolis, Minnesota — the time of year when all that snow melts during the day then refreezes at night, creating chunks of ice and giant puddles on city sidewalks and streets.
The stomp is my 10-year-old son Thom, and my boyfriend Matt, slamming their feet on chunks of ice. When it crunches and breaks apart, they laugh. I’m walking ahead of them and smiling — not just because the two of them sound like a couple little kids having fun — but because it’s the same thing Thom and my husband Colin would be doing if Colin were still alive. I’m smiling because despite what has happened to Thom and I over the last year, we can still feel happiness. I’m smiling because I know everything is going to be OK, even though there are moments it feels like the grief is overwhelming.
I’m the luckiest unlucky person.
In April 2018, just hours after Colin was killed in a cycling accident on his way home from work, Thom asked me if I was going to get married again. Colin had been dead less than two hours, and out of all the things Thom could ask, he wanted to know when I was going to shack up with some other dude.
I mean, what the heck?
In retrospect, Thom was just grasping for something to make life seem a bit normal in what was now uncertain. Of course any new guy wasn’t going to be a replacement for Colin, but it would offer some sense of normalcy. So, Thom and I started talking about me dating again very early on after our loss. I made it clear to him that I wasn’t going to bring any guy into our lives that didn’t deserve to be there. I knew I was going to be very protective and nobody was going to meet my son unless I knew it was super-duper serious.
A month after Colin died, I felt restless. I wasn’t ready to be in a relationship, but I did want to go out and have a meal and conversation with a male who wasn’t my son or one of our friends. So I did what every other normal widowed person would do — I consulted Google. When is it too early to date after losing a partner, I typed in the search bar.
“Widowland and dating is great because if you start dating too soon, people will certainly tell you about it.”
Widowland and dating is great because if you start dating too soon, people will certainly tell you about it. It’s also great because if you don’t start dating within a certain timeframe, people will certainly tell you about it. There’s no winning when it comes to dating in Widowland, because people who have no clue what they are talking about like to put you on this magical timeline for grief.
There is no magical timeline.
I went out on a date a month after Colin died. I was still dead inside, but I enjoyed the conversation. He walked me to my car and tried to kiss me and I turned my face and his wet mouth ended up on my cheek.
I had been out of the dating scene for nearly 17 years and this is what dating is like these days? Gross!
Over the next couple months, I went on a handful of dates with other guys I met through mutual friends or found on a dating app. Dating as a widowed, 40-year-old mom felt like too much work. It was hard to coordinate schedules, find a babysitter, pay for a babysitter. It didn’t help that my responses to these guys were basically, Nope, No way, Next, and Nice, but no thank you.
I did go out a couple of times with a father of three who was going through a nasty divorce. We bonded over music, have the same sense of dark, sarcastic humor and enjoyed telling each other stories about our kids. While I knew he wasn’t the one for me in the long term, the month we were together was exactly what I needed to show me things were going to be OK and that I could feel happiness with someone else.
And that’s when something clicked — I stopped comparing everyone to Colin.
Matt and I began dating four months after Colin died, but the truth is that we’ve known each other for years. We worked together, ate lunches together, traded text messages late at night when we just needed to talk to someone. I got him and he got me. It feels like we’ve been together for years.
One night, several years ago, Colin and I were talking about who we would date if one of us died. Colin would date 90s rocker Liz Phair. I said I’d date John Cusack or Paul Rudd (line Colin, Matt, John and Paul up and you’ll see I clearly have a type). Colin looked at me, and without hesitation said, “What about Matt?”
I’m not saying Matt and I were supposed to end up together, but I’m not not saying that. Life is just really weird sometimes. Nobody knows how the universe works.
“Your heart doesn’t close up when your person dies, it just makes room for someone else. Your love for your dead person isn’t diminished by loving someone else.”
Matt knows he’s not a replacement. Matt knows it’s not a competition. Matt knows he isn’t a consolation prize and he isn’t jealous of the love I still feel for Colin. After all, Colin is dead and Matt is living. I could choose to be with anyone, or no one, and I choose to spend this second chapter with Matt.
A couple months into us dating, Matt said one night, “You know, I love you. I love Thom. And I love Colin.” That’s when I knew Matt was the one — the one I told Thom I would make sure deserved to be in our lives.
Your heart doesn’t close up when your person dies, it just makes room for someone else. Your love for your dead person isn’t diminished by loving someone else. There is no limit on how much love we can have. You can love two people at once. Heck, I have a button on my jacket that says, “I love Colin” and I don’t give a frick if it makes people uncomfortable.
Loving someone else should be a testament to your dead person. It should say that you loved your dead person so much, you want to experience that again. Whether that’s one month out or 10 years out.
Love is not a finite resource. And while I’m extremely unlucky, I’m lucky to get another chance.
Rachel Brougham is a writer and editor who lives in Minneapolis, Minnesota. She enjoys awkward conversations, crying during long walks and tacos. You can find her on Instagram @rachbrougham and Twitter @RachelBrougham.
In our Your Stories series, people who have lost a loved one share their unique perspective through essays, poetry and artwork. This week, Sarah Keast shares her hard-won wisdom on coping after the sudden and unexpected death of a partner.
Sunlight danced through the cottage. Squeals of joy echoed from the lake as my five-year-old swam with my dad. The baby monitor hummed as my two-year-old napped in a pack and play covered in a mosquito net. Hot, sticky sweat rolled down my leg as I watched my mom answer the phone and quietly whisper, “Okay, I’ll tell her.”
The world continued to turn as mine was about to explode. My mom hung up the phone, walked towards me with tears welling in her eyes, and said: “He’s dead.”
The walls caved in, the floor fell away and the room went dark. Distantly, I heard someone screaming in sorrow. As my mom’s arms wrapped around me, I realised that the person screaming was me.
On August 7th 2016, my husband, my best friend and my partner in life died unexpectedly from an accidental heroin overdose. He had struggled with depression, anxiety and substance use disorder for half of our 16 years together. The life and love we had built was gone in an instant. Like a magician’s trick, he left this earth in a puff of smoke. He was here – and just like that, he was gone.
My advice for coping with the sudden death of a spouse
How do you go on when you get a phone call like that? My world ended in a split second. Yet somehow, I was supposed to pick myself (and my young kids) up and carry on? I could barely catch a breath, let alone cope with this sudden and devastating loss.
It wasn’t pretty, and I cried a lot. I screamed a lot. I laughed a lot. But somehow, I got through the early days of this unimaginable nightmare. And as I sit here now, 2.5 years later, I can see that there are a few things that I did that helped me cope and made those days a teeny tiny bit more bearable.
1) You will feel ALL the feelings
You are now on a roller-coaster ride called grief. You did not sign up for this ride, but you got thrown on it, so hang on tight.
I would find myself completely frozen and numb, and then five minutes later I would be sobbing. Half an hour later, I would be screaming, “Fuck you for dying” at my husband’s pictures. I’d find myself overwhelmed with relief that my nightmarish life living with and loving someone struggling with substance use disorder was over. Then the guilt over feeling relief at his death would crush me, and I would be frozen and numb again.
Whatever feeling(s) you feel are normal. Feeling them all in the space of five minutes is also normal. Be with whatever feeling comes. Lean into each feeling, let it move through you.
Early on, I’d beat myself up over most of these feelings. I thought I was only ‘supposed’ to be sad. I didn’t know that the other feelings were also normal. In fact, whatever feeling(s) you feel are normal. Feeling them all in the space of five minutes is also normal. Be with whatever feeling comes. Lean into each feeling, let it move through you.
The feelings are all there inside of you, and if you push them away or ignore them or stuff them down, they only *temporarily* go away. They need to come out, so give yourself grace and let them.
2) Ask for – and accept – help
I could barely think straight, let alone cope with the demands of daily life in the days, weeks and months after my husband died. I quickly realised I couldn’t do this alone. I had to accept help, as humbling as it was to do so. You simply cannot manage grief and daily life on your own.
My friends and neighbours organised a meal train for me where people signed up to bring my family a meal each night. I accepted these meals every night for months with gratitude – and embarrassment, and shame. Why couldn’t I handle everything? I’d yell at myself.
But as the nights of delicious home cooked meals continued, I could feel the difference it was making in my days. I cried tears of relief after the first snowstorm that winter when I was struggling to get my kids out the door for school and I realised my neighbour had shovelled my driveway. I suddenly understood how much people wanted to help me.
Letting go of those useless feelings of embarrassment and weakness was so helpful. I embraced the help that people wanted to give me. Accepting their help meant that while others dealt with the day-to-day stuff of my life, I could focus on the things that mattered: coping with my grief and parenting my kids through this nightmare. So: let people help you. They want to help. You do not have to do this alone.
3) You are in charge of your grief journey
The world, and especially the western world, is terrible with how we approach grief. Everywhere you turn, there is pressure to ‘get over it’, ‘move on’, ‘find closure’. Ignore those messages. You are in charge of this journey. You do not have to get over this when someone else tells you to.
You may well grieve your entire life. The way you grieve and what you feel will change, but in some way, shape or form, your grief will always be with you. This is okay. You will find ways to integrate your grief into your life and to move forward in your life, but this takes time.
It’s okay to cry, yell, laugh or say nothing. You are the only one who knows what is best for you. There is no right time to do any of these things and there is no wrong time. There is only the time that is best for you. Listen to yourself.
In the meantime, keep your house as is and don’t move a single thing of his/hers, if that’s what you want. Or do as I did, and get rid of everything in a grief fuelled rage and re-decorate immediately – if that’s what you want. Date whenever you want. Say no to invitations to family events or holiday celebrations if they seem too hard or too overwhelming. Or say yes to every invitation, if you want the company and distraction. It’s okay to cry, yell, laugh or say nothing. You are the only one who knows what is best for you.
There is no right time to do any of these things and there is no wrong time. There is only the time that is best for you. Listen to yourself.
4) Care for your basic needs
Eat. Drink water. Sleep. Move. Shower. Simple things, yet they can do wonders to help you through this nightmare. I couldn’t figure out why I was so thirsty for the first few weeks…and then it dawned on me: oh yeah – I’ve been crying for days, so I must be dehydrated! Upping my water intake helped immensely.
I also went to a lot of hot yoga classes early on. I felt like I was literally wringing the grief out of my body with every posture. I was sweating so much that no one could see all the crying I was doing! It was so cathartic.
Grief saps all of your energy, and I felt like I was moving through cement most days. Anything you can do to replenish your energy is so helpful. Treat your body and mind with loving kindness as you journey through this nightmare. And yes, that may include cookies and ice cream as needed.
5) Find your tribe
Losing your spouse suddenly is a completely life altering and isolating experience. My long-time girlfriends have shown up for me in spades since my husband died, but all of their partners are still alive. They want to understand what I’m going through, but they can’t. The truth is, you can’t truly understand unless you are going through it too.
Find your tribe, so you don’t have to navigate this nightmare alone. There are online groups for widows and widowers on Facebook. You can follow other widows and widowers on Instagram. Find a support group in your area. Use your networks to find others like you.
Once you do, it’s a beautiful thing. I would never wish for my husband to die, but because he did, I’ve met some amazing women who have been instrumental in my grief journey. I am so thankful that I found my tribe. I’m not sure I would still be standing today if I had not.
Losing your spouse suddenly is earth shattering, life altering and indescribably painful. But you will survive this. You will thrive again. I cannot tell you when, as it’s different for everyone. But you will. Until then, just breathe. It’s the only thing you have to do in this moment. Breathe. You can do this.