Why Prematurity Awareness Month matters

November is Prematurity Awareness Month. The global event seeks to raise awareness of the challenges facing premature babies and their parents.

A baby born at or before 37 weeks is classed as premature – babies can be born as early as 23 weeks’ gestation and have the chance to fight for their life. Of course, the earlier the baby is born, the more complications they will face.

There are many reasons for a baby being born prematurely: these can include maternal illness such as preeclampsia and/or HELLP syndrome (which is why my son, Hugo, had to be born at 24 weeks); an ‘incompetent’ cervix; infection; gestational diabetes; premature labour; problems with the placenta or baby’s development. Sometimes there may be a range of problems – or no identifiable problem at all.

Hugo

Hugo

The premature birth of a baby will very rarely be the result of anything an expectant mother did or did not do, but that does not stop the mother feeling guilty. When Hugo was born, I felt like I had failed as a woman and a mother: I had failed to protect my baby and allow him to grow safely inside my womb for the full 40 weeks. It does not matter how many times I am told that we both would have died if Hugo had not been delivered, and it is irrelevant that my rational brain confirms that is true – the feeling of guilt will probably never leave me.

Very few parents expect to have a premature baby: having a baby in a neonatal intensive care unit can be a terrifying, isolating and disempowering experience for mummies and daddies.

Parenting in a neonatal intensive care unit is very strange indeed. Depending on your baby’s gestation when they were born, they might not look like how you expect a baby to look because they are so small – they don’t have the chubbiness typically associated with a newborn baby.

The clear plastic of the incubator might be relatively thin, but it often feels like it may as well be miles thick because it prevents you being with your baby – it disrupts the normal course of events.

Mummy and Hugo

Mummy and Hugo

Having to ask permission to touch your baby is frustrating. Helping with cares can be difficult but rewarding. Cuddles, whether kangaroo (skin-to-skin) or traditional cradle cuddles sometimes have to be fought for – but they are worth every precious second.

Seeing your baby attached to all kinds of machines and equipment, with all kinds of beeps and alarms is, naturally, upsetting. Seeing your baby in distress or pain is devastating. You can feel so helpless.

I never liked the word ‘rollercoaster’ to describe the neonatal experience (because it implies something voluntary and fun, and the experience is neither of these things) – but it is the most appropriate word to describe the highs of the good days and the distress of the not-so-good days. Preemies can often deteriorate quickly, which means there may even be good hours and bad hours within the course of a day, adding to the emotional stress.

Depending on a baby’s condition, they may be in hospital for days, weeks, or months. All parents are exhausted, trying to get their heads around what is happening to their baby, medical terminology, difficult decisions – as well as trying to keep themselves sane.

Skin-to-skin with Mummy

Skin-to-skin with Mummy

However a baby leaves hospital, it is an experience that will stay with a parent forever.

Parents who are fortunate to take their baby home often experience post-traumatic symptoms. Some babies may have developmental difficulties, which require extra practical and emotional support for the whole family.

Parents whose babies die – as Hugo did, aged 35 days – may feel haunted by the experience, in addition to the grief over losing their baby. Questioning whether we made the right decisions, if we could have done more, whether Hugo knew how much we love him.

Everything described above outlines why Prematurity Awareness Month is so vital. The world of a neonatal intensive care unit is very rarely witnessed by those not directly involved: we need to highlight the challenges faced by both babies and parents, make sure they have the support they need during their stay in hospital as well as after. We also need more research in to the causes of premature birth, so we can help more babies stay safely in their mothers’ wombs as close to 40 weeks as is possible.

Organisations such as Bliss, Tommy’s and March of Dimes are all supporting the month, and will be raising awareness of a range of pertinent issues – as will I on my blog, so please check back during the month.

The focus of the awareness month is World Prematurity Day on Monday, November 17. Supporters are aiming to turn social media purple in recognition of these tiny beings who take up so much room in your heart. We look forward to receiving your support, too.

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8 Comments on Why Prematurity Awareness Month matters

  1. meghanoc
    November 1, 2014 at 9:54 pm (2 years ago)

    interesting about your thoughts on the word rollercoaster. for me it’s a fitting word (more so for my pregnancy, as my time in the NICU with Mabel was only 6 hours) because of the ups and downs we had meeting with specialists (“you’re baby will likely die” versus “we wont know until she’s born”). For me- I hate rollercoasters. I hate the feeling of freefall and the anticipation that comes before. I imagine that the feeling I get on a rollercoaster must be similar too what it feelsl ike to die- or thats what my body thinks is happening. but I totally understand how its the wrong word for people who enjoy rollercoasters (or even for those who dont, it is associated with fun like you said. i’m going to reflect on this!)

    Reply
    • Leigh Kendall
      November 2, 2014 at 10:06 am (2 years ago)

      The use of language is fascinating, isn’t it? Personally, I can take or leave rollercoasters – I haven’t been on one for years – while Martin absolutely hates them. While the word ‘rollercoaster’ is useful to describe the ups and downs of a preemie’s journey, it’s also important to consider what the parent thinks of rollercoasters too – another incidence of cognitive dissonance. xxx

      Reply
  2. Joelle
    November 1, 2014 at 7:21 pm (2 years ago)

    Hi Leigh,
    Thank you for highlighting this important month, it is so vital that awareness is raised & that parents of premature babies get the support & information they need.
    Coincidentally 17th Nov is also my Florence’s birthday. She would have been 5 this year but I remember the confusion, fear & ups and downs of the NICU as if it were yesterday.
    Xx

    Reply
    • Leigh Kendall
      November 1, 2014 at 8:37 pm (2 years ago)

      Oh Joelle, what a poignant day for you. I guess the NICU is something you never forget. Parents need all the support they can get, before and after, and babies need the best possible care. I’m doing it in memory of not only Hugo, but your beautiful Florence and all other babies who didn’t make it home. Lots of love xxx

      Reply
      • Joelle
        November 1, 2014 at 9:12 pm (2 years ago)

        You’re so right & the work you do in memory of Hugo is an inspiration.
        Your kind words touched my heart & brought tears to my eyes, thank you xx

        Reply

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