Safer Sleep Week 2017

This week is Safer Sleep Week

An annual event run by The Lullaby Trust

The aim is to raise awareness of how we can ensure

That all babies are sleeping in the safest environments possible

When you fall pregnant

And are expecting a baby

Particularly your first

It is easy to get carried away

With buying pretty things

Non essential things

That unknown to some

Can actually be dangerous

I look back now at Esther and William’s cots when they were babies

And I am horrified

Loosely tied cot bumpers

Blankets

Cuddly toys

Sleeping together in one cot

We used to laugh at how William rolled on to Esther during the night!

I did not know any better then

I was not really aware of the issues around safer sleep

I was not really aware of SIDS

I had no real knowledge of baby products

And what they were for

Or how they were rated for safety

Esther and William were born at 27 weeks

They weighed less than 5lbs when we brought them home

After 59 days in NICU

We were told lots in hospital about avoiding readmission

Through coughs and colds and infectious diseases

I do not remember being told anything about SIDS

And yet being prematurely born

And still such a tiny weight

They were high risks babies for Sudden Infant Death

Thankfully

They are still with us

Alive and well

And almost seven years old

Sadly I cannot say the same for Matilda Mae

Our perfect baby girl

Born on her due date

A good size healthy baby at a little over 7lbs

Breastfed

She slept with me for much of her life

Only at around 7 months

Did we start to try to get her to sleep alone in a cot

Her cot had no bumper

She had a breathable toy in her bed

A new mattress

She slept in our room

I had learned a lot between the twins and our miracle baby

I was aware of SIDS and safer sleep

Matilda Mae was breastfed

She was over 6 months of age

She died against all the odds

I question myself everyday about her death

But the coroner was very clear

Matilda Mae did not suffocate or overheat

This was not an accidental death

Her tiny baby body was taken to Great Ormond Street

Cut open, pulled apart and investigated

They tested everything they could

No cause of death could be determined

She was an infant who died suddenly and unexpectedly

And we have to live with the fact that we may never know why

There is nothing I can do now

To bring my daughter back

But there is everything to be done

To try to reduce the number of infant deaths in the UK

I can work with The Lullaby Trust

To raise awareness of Safer Sleep

To highlight products that facilitate safer sleep

To help parents understand what to avoid and why

I can help to raise money to fund research

That may one day tell us why our daughter

And so many other babies

Die without explanation

I can and will do all of these things

Because what else can I do?

So this week

Safer Sleep Week

I will be talking about ensuring babies sleep safely

Wherever they may sleep

Before you read the posts coming up

I would very much appreciate it if you read the words below

(original post here)

Written by myself

And a fellow SIDS parent

Thank you

Please make sure you are following myself and The Lullaby Trust this week

This Safer Sleep Week

SIDS: We Don’t Know What It Is Yet But We Do Know This!

We do not yet know what causes SIDS

But we do know what it is not

Before you choose to share your opinion on SIDS

Please make sure you know the things that it is not

SIDS is not when a baby suffocates or overheats

SIDS is not when a baby gets caught in a cot bumper or cord

SIDS is when no cause of death can be ascertained

It is a syndrome of exclusion

When every other reason has been discounted

SIDS is when a healthy baby dies

Suddenly and with no apparent cause

Yesterday I wrote a rambling post about SIDS

Because I was feeling emotional and angry

Because we are not handling SIDS right

Safe sleep is of course important

But you can follow all the rules and guidelines in the world

And your baby may still die

That is the cruelty of SIDS

The day you are told

That there is nothing that could have been done

Knowing that you may never know exactly why your beautiful healthy baby died

Just died

Today a fellow parent

A father who lost a daughter

Sophia

Has written a post about SIDS that is so important

A post I wish that I had written myself

And I am honoured to be able to share with you

Please please read this

And please please share

This is what SIDS is

This

And this is why we are struggling to eradicate SIDS completely

Because we do not know what it is yet

All we know is this

After the publication of the NICE consultation on safe sleep this week, I’ve seen a lot of confusion from internet commentators on what Sudden Infant Death Syndrome (SIDS) is.

Having read most of this rubbish, I feel the need to say this… to be clear, no-one I know or chat to on social media has annoyed me, but I’m always trying to raise some awareness of what SIDS is.

When a baby dies suddenly and unexpectedly, the death is reported to the coroner as a Sudden Infant Death, where a postmortem is carried out.

Sometimes a cause of death comes out of this, such as suffocation, an accident, mistreatment, illness, or an underlying medical condition. This is not what Sudden Infant Death Syndrome (SIDS) is.

SIDS is when a medical professional and police inspector visit your house the same day your baby died to inspect where the baby lived and where it was found so that they can (quite rightly) rule out foul play or things that may give clues about why your baby died.

SIDS is when they hold a postmortem on your child and no initial cause is found.

SIDS is when they send away tissue samples from the postmortem to do further tests, and still no cause is found.

SIDS is when they produce a full postmortem report, which a specialists meets with you to discuss and explains that absolutely no cause of death was found, and as things currently stand in medicine, we don’t actually know why sometimes babies just… die.

SIDS is when your child’s death certificate comes back with simply “unascertained” written on it.

SIDS is trying to explain to people who ask what happened to your child that you have no idea what happened. At all. They were just in a place you thought was safe and in a condition that you thought was normal.

SIDS is also trying to explain to the children remaining that their sibling has died, and you have no idea why.

SIDS is looking at the children you have left and worrying whether what caused one of your children to die could happen to them. And you don’t know how to prevent it, and that no-one cleverer than you does either.

SIDS is learning that you have another child on the way, and rather than being overjoyed having niggling doubts.

SIDS is hoping that one day our knowledge of the human body advances to a state where maybe you’ll finally understand why your baby died, and even better being able to stop other people going through the same.

SIDS is not “cot death”, which is a phrase considered outdated because apparently normal babies unexpectedly die in all manner of locations, and the cause of their death is never explained.

SIDS is something that happens to other people, until it affects someone you know.

SIDS sucks, for anyone affected by it (which is more than just the parents). It’s a shame that I’ve seen so many people saying “I know someone whose baby died of SIDS after suffocating under the duvet” and similar.

Having said all of that, if you ever care for a baby in any capacity, please do ensure that your knowledge of safe sleep is refreshed and up to date so that you can reduce any risk factors and some of the ‘triggers’ that seem to increase the chances of being affected by a sudden infant death.

Quoted with permissions from http://chutzpah84.wordpress.com/2014/07/05/about-sids/