Transcript of
Neonatal death
There are many reasons that a baby could die
and be considered a neonatal death.
They could be born with something seriously wrong
and live for a very few days.
They could die within an hour of being born.
They may be large babies
that aren't babies that go to a neonatal unit
but have got something seriously wrong and they die
or they might be a baby that goes home and dies
of some condition that wasn't necessarily known about
when they left the hospital.
They die at home.
If it's within the 28 day after birth, that is considered a neonatal death.
It was like I'd been picked up and plonked on a different planet.
I was taken into this unit that had ten incubators in in total.
Machines bleeping, wires everywhere, nurses everywhere.
I've never seen anything like it in my life.
It's a very frightening environment, a neonatal environment,
particularly the intensive area.
There are loads of clicking machines and whirring and bleeping
and you never know if it's your baby or someone else's baby.
If any baby's monitor goes off, it sets out a real fear for the parents
that, "It was my mine this time, but it could be next time."
After I'd been there for about ten days, Kristina had come off the ventilator
so she was breathing for herself.
She just had the CPAP monitor.
They said, "Would you like to hold her?"
Wild horses wouldn't stop me holding her.
It was the one and only time that they took her out of the incubator
and they laid her across me
and we sat there for probably two and a half hours
until she needed to go back in.
They said the same. "Would you like to hold Lucy?" I said I'd love to.
But when it actually came to it,
they said, "She's not well enough today. Maybe tomorrow."
But it never happened.
That's what's quite hard knowing that I've held one and not the other.
It never occurred to me that they'd both die. It wasn't going to happen.
So I think, in a way, when Lucy died, it was the worst thing ever.
I think one of the things
that really is important to recognise around neonatal death
is that for parents there's an enormous joy of actually having a baby,
even if it's born early or with something wrong,
there's this pride in actually having had a baby and the joy of that.
Then there's the enormous despair and devastation
when that baby has something very wrong with it or that baby dies.
The complex swing of emotions is very, very great.
I really did beat myself up over it for a long time,
the fact that I had strong feelings for Lucy but not so much for Kristina.
But then, as time went on, actually it switched.
I started to distance myself from Lucy.
When I thought there could be a chance that she might die,
and Kristina was going to survive, suddenly it all changed.
Bonding with them, I suppose, depending on who needed you the most.
Kristina's death was a lot more drawn out.
- It went on all throughout the day. - Yes, it did.
(Leigh) I remember sitting in the waiting room
and it was probably the longest hour of our lives.
Eventually, they came down and said,
"We've done the operation, but we can't save her."
Parents love their baby every bit as much when it's died
as they do when it lives,
so we need to give ultimate respect
for how we approach families around a postmortem.
We decided against it.
When they were alive, they were pulled and prodded and poked so much
that we just thought now they've gone,
it's not fair on them getting pulled about any more.
So we decided it's not fair on them, so we weren't going to do it.
Although there's all these medical terms as to why they died,
purely and simply, they died because they were born too early. We know that.
It doesn't really matter, the official term.
They died because they were born too soon.
Men and women often grieve very differently.
However, how they're treated
by their family, the hospital staff, the people involved,
has a big impact on how they manage the rest of their mourning.
It's not helpful to give Dad all the jobs to do
and Mum all the loving support.
Dads need loving support.
Mums might need to be given some of the tasks that there are to do
around a baby that's not well and then eventually dies.
Talking to people that have been through the same
is the only thing that helped me.
Other people will try and understand
but unless you've actually been through it yourself, then you don't know.
I never thought I'd be the kind of person that would walk into a group
and say, "Hello, my name's Leigh and I've lost my twins."
I'll talk to people, even if people don't want to listen.
Sometimes you need to talk. Just force it on people.
They may feel a little bit uncomfortable
but at least you get to say what you've got to say
and it's off your chest for that day.
In fact, it's the best thing I could have done.
I surrounded myself with people
who completely understood everything that we've been through,
had the same emotions, the same feelings,
I remember thinking, "This is normal, then."
I've got these silly little memories that we have got...
..that make us smile, and we've always got that that we can look back on.
(Leigh) The more than time goes on,
you do just learn to cope with it a little bit better.
You still have good days, you still have bad days.
You can be walking along, minding your own business
and someone walks past with a twin push with two little girls in it,
and then that's it for the rest of the day.
But as time goes on, it does get easier to live with.
