17/11/2015 11:51 GMT | Updated 17/11/2016 05:12 GMT

Why World Prematurity Day Matters

November 17 is World Prematurity Day.

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.



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 Blissrevealed 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.

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 Bliss open letter
  • Donate money to Bliss (or other premature baby charities - many units have their own, such asFirst 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).

Leigh Kendall is a writer, campaigner, and patient leader. She also writes at Headspace Perspective. Image: blogger's own.