Tag Archives: infant loss

Children’s Grief Awareness

Children’s Grief Awareness.
People struggle with talking about death, and in particular when it involves children’s grief.
I was a child when I lost my grandfathers.
One it was all terribly hushed, there was rarely any mention. When the other died I was told he’d gone to sleep. For me it made a natural thing difficult, would I sleep and never wake up? There was never any real openness about it, which in my mind, even now made it terrifying.

Sibling Grief

sibling grief

When our five week old daughter died it wasn’t me who told her siblings, it is definitely something I wish I had. But I couldn’t process what on earth had happened.
It certainly wasn’t something I could hide from them.
Unfortunately when it comes to the loss of a baby, of a child, society wants you to be silent; there’s a need to stop talking about the tiny person, to forget.

For us as a family Melody’s immediate family, made the decision to be open with her siblings.
A week after she died it was my oldest daughter’s birthday; there was no locking ourselves away, we had to return to normality. We’d already brought presents for her; in our minds we knew who was giving her what; which included a present from Melody – she wasn’t expected to die. My husband and I chatted between us made the decision that the presents would still be from Melody.
To outsiders this seemed strange, it probably was but there is no text book, no right or wrong when it came to early grief of our daughter.

Criticism

As bereaved parents, we are often faced with lots of criticism from people who quite frankly don’t understand. They’re lucky they don’t.
We needed to be grateful for having our living children; or being over the death of our daughter.
We know she wasn’t here long, we are reminded of that daily.
“At least you have other children”
“At least she never came home.”

Emotion

Watching my children cry, sob because they had to learn the hard way that babies die, feeling not only helpless but guilty too…I’ve been made to feel like that many times.
Having to tell the children that she wouldn’t be coming home like she was supposed to.
Seeing a tiny coffin in the church; this was then placed in the ground.

We didn’t know if we wanted them at the funeral; but I guess we were selfish maybe in wanting to break without the children being there; we had no idea how we would be. But they did go, my daughter read a story.
There’s nothing least about any of it.
So, having made the decision to be open, we chose to be led by them.
Of course it was hard; we were never able to let grief grip us, there were no days in bed, no crying on the sofa for days on end.
Of course we cried, it wasn’t something we could control, we didn’t want to. Crying is normal and healthy thing to do.

They needed to know that they could cry.
They chose to be as open as they wished, we literally followed their lead. Things like talking about her or visiting her grave.
For me her grave is full of horror, I hate it. I visit because I’m her mum, but rarely.
But if the children want to, then that’s what we do. They’ve taken the role of tidying her, if my husband or I place items; they move them to a spot they prefer. They look out for her.

Off Days

 

But there is also the other way too; where just recently one of them didn’t want to talk about her. He was having a moment where he preferred he didn’t have a sister who died. From an adult point of view, from my own grief I quite often agree with him. There are days when people ask me how many children I have; and I lie or simply the days where I just don’t think about her. That is okay. He fears he would be bullied from his experience. But that is possibly down to the fact that there aren’t many of us in this situation. And society as a whole would rather we keep it quiet. Truth is told he is probably not the only one in his class who has lost a sibling, either through pregnancy or after.

Yet today he is asking to buy her an “M” ready for our crafting session this weekend.

Individual Grief

 

Grief is incredibly individual especially a child’s grief; there certainly are no hard rules.

Grief and death as a whole are both so taboo, yet it sadly affects everyone in their lifetime.

The taboo is even more so when it involves baby and infant death, it shouldn’t. To talk openly and freely helps those who are in the grips of grief. It helps spread awareness, often helps save others too.  Time is no way a healer; I wish that things were different, I wish that she hadn’t died; biggest wish is that I wish my children hadn’t lost their sister.

We are nearly six years down the line, I really am so proud of everything they have done since; how well they have coped. They have two new sisters, they now educate them of their sister “who lives in the clouds.”

Sibling grief

 

Neonatal loss awareness

Infant Loss Awareness – Kate’s Story

Tilly

On the 22nd of March 2012 I gave birth to a beautiful baby girl, Tilly Grace. She lived for 30 days. 5 of those were spent at home with us and the rest in Hospital. She spent most of her short life on a ventilator in paediatric intensive care, where she died on the 24th of April after her ventilator was withdrawn. Tilly had early infantile epileptic encephalopathy and her outlook was very poor, she was unable to maintain her own ventilation and was heavily medicated for seizures, with limited brain activity.

Lost

But here’s the thing, Tilly was not a miscarriage, she was not still born, she was not even a neonatal death. She was an infant death. These terms are defined. There are charities and support for different types of loss. Yet somehow, when you give birth to an apparently healthy baby who later dies, you get lost.

In the early hours of the 25th of April my husband and I left the hospital without our baby. We had to go home and tell our three and a half year old that her sister had died, that she would not be coming home again. I had to tell a midwife who called to see ‘how things were’ that I was organising a funeral’. I had to attend a postnatal check up on my own and tell the GP that my baby had died. And the week before Tilly’s first birthday, I had the results of her new born blood spot test through the post. Not one health professional got in contact with me. Not one health professional offered any support. Once I left that hospital we were on our own.

Infant Loss

When I look back, I wonder how we got though those early days, weeks and months, but we did. It’s appalling that there is such limited provision to support parents and families after the loss of a baby, and that there is such a difference across regions. I was lucky to have a supportive network and over the months I was able to find coping mechanisms, but I can see how easily it could have been very different. No one family should feel alone and unsupported after losing a child.

I am about to embark on a career that will allow me to support women and families in many ways, including when they lose a baby. I endeavour to do my best so that no women has to explain why she hasn’t got her baby at her postnatal check, to ensure that I do the communicating and that she accesses the right support. Something positive out of something devastating. Knowing that my experience has shaped me but it doesn’t define me, that I live to make both my girls proud.

infant and teddy

 

Kate’s Story from Tilly’s Marathon

Thank you for joining us on this awareness series. 

Thank you to Warren, Marissa, Beth, Kate and John for letting me include your beautiful babies.