What Prematurity means to me this World Prematurity Day

Today is World Prematurity Day; the day that the reality of prematurity may just enter into the consciousness of those who haven’t been affected by the harsh realities of prematurity. Approximately 60,000 babies are born prematurely in the UK every year – roughly 1 in 11 of births. Around the country, supporters of our little fighters will be taking part in Little Lights Walks to raise awareness and crucial funds for Bliss. Last year I was one of those supporters and even made it into our local paper. This year I’m a busy mum working full-time so I’ll be flying the flag for World Prematurity Day through social media – and I’m delighted to learn that Pampers is again supporting our babies and our NICUs through a generous fundraising campaign. Joining in on a Bliss campaign, Pampers will donate £1 to Bliss for every post shared today on social media with the hashtag #PrematurityIs and by also tagging Pampers_UK on Twitter.

So what is the reality of prematurity? The answer will of course differ for every parent. But I’d like to reflect on my perceptions of prematurity this World Prematurity Day:

#PrematurityIs losing your parental control. You don’t get to choose when you hold your baby – you’re lucky if you get to hold your baby on the same day that they’re born. Planned to have that uninterrupted ‘golden hour’ after the birth? Skin to skin and immediate breastfeeding? No chance. Your baby is whisked off to NICU before you can even get a glimpse of your newborn’s face. And when you FINALLY get to hold your baby, you’ll be sharing your moment with someone else. A nurse or two will be helping you get accustomed to all those wires. Maybe your NICU neighbour will be having a peek across the ward. No control, no choice.

#PrematurityIs the most unbearable loneliness. You’re alone on the postnatal ward, listening to the cries of healthy term babies. The catering staff pity you when they spot the empty space where the cot should be alongside your bed. The day arrives when you’re discharged from hospital and your heart breaks. I still feel teary thinking of that long walk to the car, sitting in the front seat surrounded by ‘Baby Boy’ balloons and crying uncontrollably. Although my baby had never been in our home, it felt empty. I started to build a photo wall in L’s bedroom so I could feel close to him when I expressed milk in the middle of the night. 18 months on, the photo wall remains as a tribute to his NICU journey.

#PrematurityIs nothing targeted at newborn babies being suitable for your newborn. Despite the fact that your baby has been newly born, they won’t reach the milestones and sizes labelled with their status for many weeks or months to come. I naively asked a family member to dig out the newborn outfit I’d bought a few weeks earlier for my future baby to wear home from hospital. It was the cutest little teddy bear sleepsuit with a matching hat. Maybe the hat would fit my preemie until I could buy special clothes? No chance! Even when L came home, the outfit was still gathering dust in his drawer alongside all the other newborn clothes that swamped him. The frustration of newborn clothing being unsuitable for my newborn was short-lived once I discovered the excellent range of preemie clothes available. But it was harder to find things suited to L’s developmental progress. When his peers were starting to coo and gurgle, L was still growing in his incubator. The milestones that excited me, like L finally being allowed to have his first bath, filled me with joy. I discovered at a neonatal conference that Bliss had samples of milestone cards tailored to the moments that mean so much to the parents of preemies. I used these to decorate my photo wall but it would’ve been a great help to have used these in the ‘proper’ way in hospital; something to share on social media and document the progress that L was making in the unconventional way.  To help other premature parents celebrate their baby’s development, these milestone cards will be distributed to neonatal units across the UK by Pampers and Bliss.

#PrematurityIs being obsessed with your baby encountering germs and unwanted contact with strangers – and rightly so. Babies who leave NICU are still small and still vulnerable. A micro baby attracts all sort of attention whilst out and about. For some reason, the general public think that tiny babies are fair game for unwanted contact. So parents of preemies can’t enjoy the ‘normal’ activities until they reach the stage where they feel the barriers can slip slightly. For me, this was when L started actively putting everything in his mouth. But until that milestone, I always had an array of hand sanitisers on my person and armed my pram with a ‘no touching sign’. Despite my best efforts, L still ended up in hospital twice before his first birthday with norovirus and the dreaded bronchiolitis.

#PrematurityIs needing tailored products and equipment to make your baby comfortable. We are very fortunate in the UK that we have fantastic provision to support our preemies in NICUs across the country. They are equipped with micro versions of the medical equipment preemies rely upon; teeny eye masks to protect delicate eyes from the jaundice lamps, miniscule cuffs to record blood pressure and even little cushioned pads to hold IV lines in place. But during L’s NICU stay in 2016, the smallest nappy available (size 0) wasn’t small enough. It nearly reached his chest and looked comical.

The nurses showed me some nifty nappy origami skills to make him as comfy as possible. However, nappies which are folded to size which can affect healthy development of a baby’s hips and legs. This year, Pampers developed its smallest nappy yet for preemies weighing less than 1.8lb (800g) – meaning nappy origami can be a skill of the past! These nappies aren’t available in the stores and Pampers committed to donate around 3 million nappies to hospitals across the UK and Ireland. 59 of the 206 neonatal units in the UK and Ireland have taken advantage of the donation, which equates to supplying over 18,285 preemies with properly fitting nappies.

#PrematurityIs wanting to give something back to those who helped you and your baby through your darkest days. All the preemie parents that I know have been involved in fundraising for both their Units and Bliss through attending and organising events. Regular readers of my blog will know that I organised several fundraising parties for our NICU during my maternity leave. I raised over £1000 and I feel incredibly guilty that I can’t continue these events now that I’ve returned to work. Hopefully I’ll carve out some time in the future. But for now, I can help from behind my computer screen.  This World Prematurity Day, Pampers will be joining in on a Bliss campaign, and that for every  social post shared on 17th November which includes what #PrematurityIs to you, and tagging @Pampers_UK on Twitter, they will donate £1 to Bliss. So please share what Prematurity means to you – your thoughts and a few clicks can help support premature babies and their families!

This post has been developed in conjunction with Pampers UK to raise awareness of World Prematurity Day 2017, Pampers Preemie Protection nappies and the social media campaign #PrematurityIs for Bliss, the charity for premature babies

BBC’s NICU: ‘Five Days’ on Casualty

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Spoiler alert: review of Casualty series 31 episode 28 ‘Five Days’ – watch online at BBC iPlayer. Photo credit: BBC 

Despite being sick of the sight of hospitals, I’m a big fan of BBC’s Casualty and Holby City. I hadn’t registered at the end of last week’s episode (when nurse Robyn gave birth to her baby prematurely in a graveyard) that the show would be featuring Holby City Hospital’s NICU. When my mum came over for Mother’s Day, she cautiously asked if I’d watched last night’s episode. I’d fallen asleep at 8pm (not an unusual occurrence), so no. She warned me against watching and said it had brought everything back for her. So of course, I quickly loaded up iPlayer…

Yes, I did shed some tears. Although it was only 10 months ago, it was hard to comprehend that my own baby L was also so small. It is easy to forget that we were also separated by the wall of an incubator and I had to ask permission to touch my own baby. Of course, there were various inaccuracies or exaggerations which bothered me. But on the whole, I was impressed by the BBC’s efforts. The episode captured the raw emotion of Robyn’s experience as a new mother of a premature baby. There were subtleties that the average Casualty viewer might miss, but poignant to those that have lived through the NICU.  If you still intend to watch the episode, look away, but the following scenes struck a cord with me:

  • The sight of Robyn languishing on the maternity ward, alongside mothers and babies. Great progress has been made in creating specific areas for mothers who have tragically suffered a bereavement during childbirth or a stillbirth. But the only place for NICU mums is the general maternity ward. I was fortunate enough to have a side room on the postnatal ward, but I could still hear the cries of babies for six nights straight during recovery.
  • The generic NICU environment is captured perfectly and brought back many memories. The room is lit by the blue glow of phototherapy lamps and alarms are constantly buzzing away. There are numerous shots of hand-washing, which is an all-too familiar aspect of the daily NICU parental routine. I even spotted a copy of Little Bliss on the NICU noticeboard!
  • As Robyn prepares to meet her baby Charlotte for the first time, she dismisses the nurse’s medical update to get a glimpse at her precious baby. Unlike non-NICU mums, parents like Robyn are forced to wait many hours before they can meet their newborn for the first time. A mother will often need time to recover herself from the unexpected or surgical birth and will not be fit enough to visit NICU. It is incredibly difficult to meet your child for the first time in the presence of strangers. The abrupt nature of the nurse mirrors my experience too. Whilst NICU nurses are generally incredible, they can often forget the overwhelming experience of greeting your baby through a plastic box. The curt remarks aren’t intentional; I imagine they are desensitised to the sight of a 2lb miracle.
  • The nurse’s general attitude is pretty rubbish, but again, accurate. Robyn is chastised for touching her baby too much. There is nothing more frustrating than being told what you can and can’t do with your own baby. But it happens. And like Robyn, I often left the ward in floods of tears or went outside to scream. I can remember the invisible brick wall of NICU vividly. NO-ONE WAS LISTENING TO ME! I had meltdowns in the middle of the ward. I would spend hours crying at home, on the verge of calling the Bliss helpline to ask what my options were. But like Robyn, I learnt to play the game and ask the right questions to the right people (specifically: always be around for the daily consultant rounds).
  • But the nurse does show us her softer side. Robyn is summoned to comfort Charlotte before a procedure. A dejected Robyn has lost faith and asks “What difference am I going to make?” A familiar emotion in NICU. At times I just felt like a cow, rocking up to provide the milky goodness and do a token nappy change to make myself feel better. The nurse is proved right and Robyn takes comfort from her daughter’s calmness. The nurses I despised the most in times of crisis often turned around to be my biggest ally in making progress towards discharge. Sometimes there is a purpose behind the tough love.
  • Breastmilk. A hot topic in NICU and for good reason; breastmilk is especially important for premature and sick babies. I am a huge advocate of breastfeeding and was fortunate enough to receive incredible support from my midwives with expressing. But I know many mums will recognise the pressure placed on Robyn by the nurse to keep expressing. I hope the scripted lines strike a cord with viewers – baby Charlotte only needs 2ml for her feed. However meagre Robyn’s attempts to express may be, she should be able to get enough for her baby’s tiny stomach. I loved the scenes of Robyn excitedly asking for photos of her baby’s first feed, administered by Robyn via a tube. It IS a milestone! And what an incredible achievement to feed her baby mother’s milk.
  • Robyn’s friends and the nursing staff seem surprised at her eagerness to post photos on Facebook and share updates. She must be in denial, not realising the gravity of the situation. Is it such a crime to try and think positively in such a devastating situation? I could really relate to Robyn’s need to share snaps on social media. Once you reach a certain age, timelines are flooded with photos of gurgling newborns and chubby cheeks. Robyn has a legitimate urge to recognise her baby in the same way. I uploaded a photo of L a few hours after he was born, before I had even met him. It made the birth feel real to me. Over the next few weeks, I shared endless photos with cute taglines. It is only now I can see the tubes, the yellow tinge to his skin, how desperately unwell he was. But at the time, he was just my gorgeous newborn that I wanted to show off.
  • But of course, the Beeb was bound to include some scenes which had us NICU parents shouting at the screen. Thankfully, L didn’t have the same medical issues as Charlotte so I can’t comment on the accuracy of the procedures. I did tut at Robyn being allowed far too many visitors around the incubator. I have no idea if there are different rules if you work in the hospital, but I doubt it. My hospital had various rules about who could visit at different times and it was always two around the bed maximum. Robyn’s position as a nurse seemed to entitle her to a full house.
  • And her step-brother kissed the baby at the end! A NICU baby! I actually lol’d at this point. My mum was constantly watched for any signs of interaction when she came along to visit L. As a treat, she was allowed to touch him on her birthday until I got permission from the consultant for parental rights in L’s fathers absence. But touching is a big no-no on NICU. Everyone (apart from parents with their magical powers) is a germ-ridden infection risk.
  • UPDATE: Catherine (@catjay79) kindly got in touch via Twitter to share her perspective on the episode as a mum of a necrotising enterocolitis (NEC) survivor: “The portrayal of a baby undergoing surgery for NEC was inaccurate and downplayed the severity of the condition. After surgery babies are often critically ill, kept ventilated and require intensive support. My daughter remained on a ventilator for 6 days following surgery and was bloated due to fluid retention. Holding her was simply out of the question; I could not hold her until 9 days later. The first 48 hours after surgery are crucial for these babies. Surgery is a huge risk and some tiny babies sadly don’t survive. We owe it to them to portray these things properly.”

I’m sure I’ve missed other exaggerated scenes. My focus was on the familiarity, the sounds and sights that I lived for six weeks. Five Days may not have been the perfect representation of my NICU experience, but it was a marvellous opportunity for prime-time views to peek into our secret world. Thank you BBC for showing NICU through the eyes of a struggling mother, rather than merely dramatising the plight of our tiny babies.

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This is what a 30 weeker looks like

A few days after my admission to hospital, it began to sink in that my baby might be born any day. Or in a few weeks. Maybe a month. The prognosis was uncertain, consultants were vague but there was only one purpose of the two painful steroid injections I had received. My baby was being given the best possible chance to survive outside of my womb.

In my typical fashion of wanting to prepare as much as possible for every scenario, I googled ’30 week baby’ hoping to see a glimpse of what my baby could look like. I was scared. Would my baby be covered in hair? Would he be translucent? Focusing on his appearance was a distraction from dwelling on his precarious situation.

The Google results were fairly mixed. Lots of Bounty-type websites came up, telling me what exciting stage of my pregnancy I should be experiencing. There were photos of big bumps and smiling ladies next to 30-week milestone cards. And dotted throughout were photos of real-life preemies. The results were so variable. Some babies were in plastic bags, most had wires and some were wrapped up in little blankets. When I clicked through the results, it seemed that most babies were a few weeks earlier or later than my baby. I just wanted one page were I could see a real life story and outcomes.

So here is what my 30 week baby looked like. L was born at 30+6, weighing 2lbs 10oz. He was born via emergency c-section due to absent end diastolic flow and IUGR (I was in hospital for 5 days before hand).

He was placed in a plastic bag (which I never saw) and taken straight to NICU. He was on CPAP (a type of breathing support machine) from birth until he was a few days old. Apart from being tiny, he was fine. Perfectly formed. I still can’t quite believe it.

L’s eyes were not fused shut. He did not have hair on his tiny body and he was not translucent. He was nothing like I had imagined even after my Google search. He was jaundiced, which made him look very very red rather than yellow.

He could cry, urinate and poo like a normal baby. I have no idea if he followed the same ‘first poo’ cycle as a term baby as I didn’t see him for around 6 hours after his birth. Mainly because I was bedbound after my surgery. He did not feed for a few days and received total parental nutrition via a long-line in his foot.

On his first day of life, I couldn’t hold him but I helped changed his nappy. I stroked him through the incubator and he held my finger. When I eventually held him on day 3, his head easily fitted in the palm of my hand. I held him down my top (kangaroo care) – with his head on my chest, his body stopped before my belly button.

My 30 weeker was in hospital for over 40 days. At 8 months old, he has no known ongoing health issues. He is still small but he is perfectly healthy.

I hope someone afraid of their 30 weeker finds this post. And mums of fellow 30 weekers, please do add your experiences in the comments.

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Debrief me 

Like most parents of premature babies, I’ve been desperate for answers to my situation. I couldn’t comprehend how I had gone from heading into hospital for my third reduced movements scan (which I rationalised as my usual tendency to panic about everything) to suddenly being kept in hospital, learning that I couldn’t go home until my baby was born. At 7 months pregnant.

For the 5 days that I remained in hospital before L’s delivery, I constantly received different interpretations of my situation. In a matter of hours, doctors would fluctuate from deciding I would have a c-section within half an hour to discharging me as the baby had stabilised. It was, and remains, a difficult situation to get my head around. From what I could grasp, my baby was too small and was not getting nutrients from my placenta (a condition called absent end diastolic flow). There was nothing that I could have done. Google was my friend, the scant amount of references to absent edf that I could find reassured me that it wasn’t my fault. But my baby had been fine two weeks early at my 28 week scan. Surely I had done something to harm him.

So I sought answers. I have had three debriefs since L’s arrival five months ago, two of which happened while I was still on the postnatal ward. I suffered from extreme anxiety following my c-section (unsurprisingly) and the midwives arranged a debrief for me. Someone who seemed to be a senior midwife arrived in my room. I talked through my worries and mentioned how traumatised I was from the treatment I received the night before L’s delivery. But I wasn’t seeking to complain, I simply wanted answers. The midwife was extremely abrupt with me, spending our session defending the actions of the midwife in question and trivialising my behaviour on that night (where I could not tolerate an IV drip as I had an extreme reaction). She spent around 20 minutes with me and left me a sobbing mess, making me feel even more guilty.

I conveyed my disappointment to the midwives; it was pretty clear to see, as I spent all my time on the ward in tears (when I wasn’t hobbling down to NICU of course). They scheduled a session with someone they called ‘MoM’ which I understand is the manager of midwives. She was absolutely incredible. The MoM spent over 90 minutes with me, reading every single page of my maternity notes and checking if there was anything I wanted to discuss from each appointment or incident. She apologised for the treatment I had received the night in question, which meant a lot. But most importantly, she explained as much as she could about absent edf. She had never encountered it during her time as a community midwife. I was unusual and extremely unlucky. Or lucky, in her view, that I had trusted my instincts and reported to hospital. I felt as though a weight had been lifted, finally.

But as time went on and I witnessed L go through numerous medical procedures, guilt crept back into my conscience. I needed an explanation from the consultant who made the final decision to deliver my baby early. The last time I had seen my consultant, I was hooked up to the CTG monitors after a night of no sleep and starved for a possible c-section. The last thing she told me was that my baby had a 10% chance of dying during the surgery. I was pleasantly surprised by how easy it was to arrange a debrief; I called her secretary and a few weeks later I received an outpatient appointment for Antenatal Clinic. For some reason, I still needed my blood pressure taken on the day (120/74, go me).

The consultant explained my situation with excellent clarity. I had suffered placental insuffiency, which had led to the absent end diastolic flow. As a result, L had become severely growth restricted (IUGR). The results from my placental analysis confirmed that it was infarcted. The placenta hadn’t been able to cope with L growing any further. He probably stopped growing sometime after my 28 week growth scan. I had reported the reduced movements at just the right time to save L’s life.

The consultant couldn’t explain why this had happened to me. I didn’t smoke, I wasn’t too young or old and I wasn’t overweight. My only risk factor was a first time pregnancy. But not all mums end up with their first born in NICU! My risk of subsequent placental insuffiency is increased compared to the general population, but the consultant thought it was unlikely a future baby would be so severely growth restricted. Interestingly, she said my chances would be increased if I had a baby with a different father (which is obviously the case). Apparently the body tolerates subsequent pregnancies with the same biological father in a better way.

I left the debrief with the knowledge that my stress and worry during the pregnancy didn’t cause L’s prematurity. If I fall pregnant again, I’ll be put on a course of aspirin. But I can’t help thinking my second baby will also be a NICU baby too.

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