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Trigger warning: long-term illness in childhood, bereavement

Losing a family member is gut-wrenching and heart-breaking for anyone. It’s hard for fully grown, matured adults to deal with. What do you do when you lose a child? Or a sibling?

It’s been 30 years since my baby sister died.

My experience of the loss was different from my other two sisters. In fact, we each had a very different experience based on our relative ages and how we were treated by those around us.

My brother is the youngest of us all, and was born a few years after Naseema died. His experience is different again. He had to get used to being the sole family member that didn’t go through this shared trauma, but grew up seeing and living through its effects on those he loved. I’ve never really asked him how that felt.

I won’t speak for my siblings, as that’s their story to share, if they choose to. This is just a brief reflection over how it felt for me. A seven year old that had lost her 18-month old baby sister after a battle with liver disease.

What helped

Red Sky In The Morning. A book my older sister read at the time was Red Sky In The Morning. I think maybe Naseemas health visitor suggested it to my mum after Naseema died. After my sister read it, she passed it to me. It was written from our perspective, older sibling coping with younger siblings illness and the loss. It was a hard read but helped us deal with our feelings too, and showed us that we weren’t alone in our feelings of loss and confusion.

Support from my classmates was amazing. We were all kids. Aged 7-8. But they were so kind and caring and shared my sorrow.

My classmates knew that I had a seriously ill baby sister. Some of their parents helped with walking us to school or helping with pickups as my mum spent a lot of time in Birmingham at the specialist Children’s Hospital. They understood that it was serious when we relocated from Bristol to Birmingham for 4 months. We had just returned to school in Bristol after a term enrolled in a Birmingham school. We were pulled out of our lessons on the day Naseema died, as her condition had deteriorated.

Of course, on my first day back to school after the janazah (the funeral) my classmates all clamoured around me to find out how Naseema was doing. They may not have understood her medical condition but they were really empathetic and caring.

They were happy to have their classmate back, as they assumed that it meant Naseema was stable again and so we had come back. A 7 year old should not have been the one to tell 34 classmates that their baby sister had died.

My friends and classmates (even those I didn’t get on with) were so sweet and supportive, within the limited understanding of 7-8 year olds. It was so hard for me to say the words out loud. It was weirdly comforting to see my friends sit and cry with me. I’m not a hugging person but that day, I accepted 34 hugs, well I don’t actually know how many, but it felt like my whole class hugged me. Even kids that weren’t my friends sat and cried with me.

What didn’t

The silence. People around us stopped saying her name. They stopped talking about her, even the good times. The intention was to not upset us, but it had the opposite effect. It erased her from everyday conversation, and though I was only 7, I never understood why, I just know that it felt wrong to erase her from everyday conversation. My parents and siblings were, and mostly still are the only ones to talk openly about her. It’s almost as though extended family think they’ll exacerbate the pain by saying her name or reliving stories. They’re well-meaning but mistaken. The hardest pain to bear is losing a loved one. Saying their name won’t make it worse.

Euphemisms. I have no problem saying that I have a sister that died. Others in the wider family and friends circles referred to her as passed away, passed on, or expired. Expired. That’s the euphemism I hate the most.

Not telling classmates.

All my friends and classmates knew I had a sick baby sister. The teacher, or the headteacher (who was an amazing head and became a supportive family friend) should have told the children that I was away from school longer than expected due to the funeral. It was naive of the school to assume that kids wouldn’t understand or care to ask about her health on my return to school.

The worst part

Being ignored. The day Naseema died we’d been pulled out of classes at our school in Bristol, then straight up the M5 to Birmingham. We didn’t make it in time. My sisters and I were dropped off at my uncles house in Quinton, Birmingham. My dad rushed off solo or with other adults, I don’t really remember. We sisters expected to be taken to the hospital soon.

Hours passed and no-one was collecting us. The older cousins were talking in hushed tones around us. No-one told us that our sister had died. I kept asking everyone what was going on and was fobbed off. For hours. That was cruel. Unintentional but cruel nonetheless.

When I did find out, it was by overhearing another conversation later that afternoon/ evening. Hours after it had happened. Only then were we sat down and told that our sister had died.

I was 7. I felt betrayed. Ignored. I was livid. How dare these people keep such important information about OUR family from us? How dare they know BEFORE me and my sisters?

Their ignorance of childrens capacity to understand critical illness and death hurt me. I lived it. Of course I understood. We were in and out of the hospital for the 18 months since her birth. We understood that our sister was severely ill. Our lives had been changed forever. We should have been the FIRST to be told that she had died.

I don’t think I’ll be able to forgive the cousins and aunts/ uncles. They’ll make excuses about how it wasn’t their place to break the news. Or they didn’t know how to say it.

At the time, I wouldn’t have cared how they said it. What mattered was that we were informed and not ignored. It’s important for children to be told directly that their sick sibling has died, rather than hear it second hand.

I was angry with my aunts, uncles, cousins for months. Probably years. To be honest, from writing this now it’s clear that I’m still angry, 30 years later.

It’s so important after any loss to know you’re not alone and that you can make it through. It was a slow process adjusting to the new family dynamic and the feeling that someone’s missing. I don’t remember how long it took for me to get used to the empty spaces. It just happened and hurt less one day. You don’t ever get over the death of a loved one. You just get used to living without them.

How you can help after a bereavement

Just ask. You can show empathy and kindness by asking what they need. Don’t assume or make decisions for them.

Do you need to talk? Would you prefer not to talk? Ask them what they need.

Check in. After a few weeks and the non-immediate family mourners have returned to their lives, check in and remind the family that you’re there for whatever they need.

Check in again. Don’t just give support at the start and disappear after ‘doing your bit’. Be around. Text them. Ask them what they need.

Whatever the age of the bereaved, they will need some support. My parents were grieving the loss for years, but they tried to help us through it too. I wish that our older cousins (the young adults, aged 20+) had talked to me and given some emotional support in whatever limited capacity they could.

If you’re not sure how you can help a bereaved child, I’ve linked some resources below that you can share with the parents.

External support resources

If you’ve been affected by the above, or want to know more about the services available to bereaved siblings, these are a great place to start.

Siblings and grief: 10 things everyone should know


Other support available:

Child Bereavement UK

Support for children and families, and training for professionals when a child of any age dies or is dying.

Winstons Wish

Support for children and young people after the death of a parent or sibling

The Good Grief Trust

Support for those who have lost a sibling

The Compassionate Friends

Support for bereaved children and their parents

The Lullaby Trust

Support for bereaved siblings