Thoughts for World Prematurity Day

Did you know one in 13 babies are born prematurely?

Those babies, and their parents need very special support. That’s why World Prematurity Day (today, November 17) is crucial.

My beautiful Hugo

My beautiful Hugo

Mummy, Daddy, Hugo

Mummy, Daddy, Hugo

It is a day where we think about babies born too soon, too small.

It is a day where we celebrate the babies who went home.

It is a day where we celebrate the babies who did not make it home, like my Hugo.

Today, we think about the mummies and daddies of all of these precious babies.

Today, we think about the staff in neonatal units across the country dedicated to giving these babies the best possible opportunity to survive, to thrive.

Today is a day where the charities who support babies, parents, and staff

Imagine…

You have just given birth to your precious baby, far too early. Your baby’s birth is likely to have happened suddenly: your pregnancy, that precious time spent with your baby inside you, kicking away, ripped away.

Your baby is in a clear plastic box, with wires leading to machines that beep incessantly and report numbers that seem unintelligible.

You have probably never even been in a neonatal unit before. It is an alien world.

You entrust your precious baby to a team of strangers, all of whom seem to be able to touch and spend more time with your baby than you are able to.

You try and absorb what those strangers – doctors and nurses – say to you, but often they may as well be speaking Martian for all you can understand.

You are exhausted, emotional, drained.

You may feel isolated, alone, scared.

You want – more than anything – to hear that your baby will survive and thrive, and you will go home with this nightmare a distant memory.

You may feel as though you are undergoing some sort of sadistic torture.

You may be in a hospital a long way from home. You may be worried about where on earth you will stay.

You may be in a hospital close to home, you may be able to sleep in your own bed, but you may also be worrying about transport costs, parking fees, more and more time off work, how on earth you are going to pay the bills.

Can you imagine living through all that with no psychological support?

The recent Baby Report issued by Bliss revealed that nearly a third of units can offer no psychological support to families.

It is unthinkable, isn’t it?

These families deserve access to psychological support.

You will, eventually, go home.

That arrival at home may be with your baby, or it may be without.

Either way, you will need support then, too.

You need to have someone to speak to, someone who understands what being in a neonatal unit is like.

These families deserve to have someone who will listen to them. No judgement. No advice given (unless requested). Able to signpost them to relevant services for further support where needed.

The families who take their babies home need to have access to health professionals who understand the needs of preemie babies as they grow and develop.

The families who do not take their babies home need to have access to psychological support from people who understand baby loss, understand the trauma, the what ifs, the ongoing, enduring impact.

All these families need clear signposting, clear pathways. They should not have to search high and low for support, explaining their story, their long, complicated and emotional story ad infinitum to endless health professionals who may listen kindly, and with sympathy but have no idea what to do with you.

Or, they may be completely insensitive. It’s a lottery, a game of roulette.

Below are some graphics provided by Bliss – there are some pretty emphatic figures.

More investment is needed for these babies, these families, and the staff who care for them.

Please do whatever you can to help.

  • Share posts like this on social media;
  • Show your support for vulnerable babies by signing the open letter
  • Donate money to Bliss (or other premature baby charities – many units have their own, such as First Touch at St George’s, where Hugo was cared for);
  • If you have had a baby in neonatal care complete this survey as part of the NHS National Maternity Review (or if this doesn’t affect you but you know someone who has, please make sure they know about it. It is open until November 30).

Bliss2015

Blissbabyreport15

 

And then the fun began...

11 Comments on Thoughts for World Prematurity Day

  1. Louise Parry
    November 19, 2015 at 10:09 pm (1 year ago)

    I thought about you and your beautiful Hugo many times on World Prematurity Day. You have created such a wonderful legacy for him and made sure that people around the world know that he lived.
    Louise Parry recently posted…To Jeremy Hunt, On Behalf of My HusbandMy Profile

    Reply
    • Leigh
      November 24, 2015 at 8:50 am (1 year ago)

      Thank you lovely xxx

      Reply
  2. Trish
    November 17, 2015 at 9:48 pm (1 year ago)

    Beautiful. Your son is so handsome – I’m so sorry you had to say goodbye, but I’m so impressed that you’ve turned that experience into the motivation to educate and empower. Thanks for this article, it kinda reminds me of the one I shared today too… it’s important to remember the struggle on this day when we’re celebrating. I will be sharing this!!

    http://preemies.about.com/od/Preemie-Parents/fl/Prematurity-is-hard.htm

    Reply
  3. Sarah Howe (@RunJumpScrap)
    November 17, 2015 at 8:27 pm (1 year ago)

    These are the sort of posts that matter as I think until it “happens to you” it is difficult to imagine but we need to as it is so important. I’m sure you tend to be on autopilot whilst it is all going on but when you go home with or without your baby, that is when the support it needed as you must need some way of getting back to some form of normality. I’m glad Bliss can provide this xx #thetruthabout
    Sarah Howe (@RunJumpScrap) recently posted…My GrandadMy Profile

    Reply
    • Leigh
      November 19, 2015 at 10:52 am (1 year ago)

      Absolutely Sarah, it’s a hidden world which means awareness is crucial. Thanks for commenting xxx

      Reply
  4. Sam
    November 17, 2015 at 8:04 pm (1 year ago)

    This really hits home hard Leigh – I think so many of us think ‘it’s unimaginable’ but actually, when you are instructed to imagine it, the heartbreak, confusion and emotional overload comes into focus. I’ve donated to Bliss – thanks for sharing this on #thetruthabout Xx
    Sam recently posted…The Truth about…#52My Profile

    Reply
    • Leigh
      November 19, 2015 at 10:53 am (1 year ago)

      Absolutely Sam, it might be a hidden world but it doesn’t take too much to imagine with a bit of empathy. Thanks so much for donating, that’s really generous xxx

      Reply
  5. Kim Carberry
    November 17, 2015 at 1:38 pm (1 year ago)

    Thinking of you today….You do such an amazing job of raising awareness! x

    Reply
    • Leigh
      November 19, 2015 at 10:53 am (1 year ago)

      Thanks so much Kim xx

      Reply
  6. Melissa
    November 17, 2015 at 12:08 pm (1 year ago)

    I wasn’t aware that there was a World Prematurity Day. I’m so sorry that this had to affect you personally in such a tragic way. Thank you for sharing from your experience. I understand (on a completely different topic) how important spreading awareness can be to a mother’s heart. I will share this on my social medias as well. #thetruthabout

    Reply
  7. Kim (sisterkin)
    November 17, 2015 at 11:50 am (1 year ago)

    My twins were born at 29 weeks (they are now almost 3). I can’t remember having an psychological advice. Although the nurses were lovely they were all so busy (and so efficient, unlike me, struggling with a teenytiny babygro!). It would have helped massively. #WorldPrematurityDay
    Kim (sisterkin) recently posted…The Random Precious ToyMy Profile

    Reply

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