Tag Archives: World Prematurity Day

Losing yourself after neonatal intensive care – Sophie’s story

It’s hard bringing a premature baby home from hospital. The journey and worries go on. I’m trying to be honest with myself, I am struggling. Last December my son Bertie was born prematurely at just 27 weeks gestation. I’d had a complex pregnancy with bleeding from 13 weeks and placenta problems. I’d had numerous hospital stays and each time came away with different reasons. To this day the reason why is still unknown, but essentially my placenta was riddled with infections and I contracted sepsis.

Bertie was born by emergency C section at Gloucester Royal Hospital at 17.18. Later that evening, he was transferred to Bristol St Michaels, and then back to GRH after 8 days. I’ve said it a million times, and I’ll say it a million more, the doctors and nurses who work at both these hospitals are wonderful, wonderful humans who ultimately saved Bertie’s life. We are forever grateful. 

Bertie spent a total of 120 days in hospital. It really was one step forward, two (or what felt like many more) steps back. This is something we were told right from the beginning and it really is true. He had countless procedures, blood tests, x rays, ultra sounds and blood transfusions. He contracted the dreaded cold in hospital, twice. Intubated, CPAP, high flow and low flow; all terms I knew nothing about before, but will now forever be etched in my mind. NICU nurses become your most trusted friends and make such an impact on your day, time spent on the unit and, this sounds corny, but the rest of your life! I will never forget them. Other mums are like angels. Speaking to mums who “get it” is the most comforting thing. All NICU journeys are different but there seems to be an unspoken understanding of what goes on behind those closed doors. I have made friends for life and I am eternally grateful for their support. I hope I helped them, the way they help me. 

We bought Bertie home on 8 April 2018. At last we could be together as a family of 4. Mike, Charlie, Bertie and me. I thought the stay in hospital was the hardest thing I’d ever done, juggling a toddler at home and a baby in hospital was heart breaking and watching your baby constantly fight is indescribable. Mike and I were like ships in the night. I’d be at the hospital during the day, he would go to work, then he’d go the hospital in the evening and I’d be home with Charlie. We’d be lucky to eat a microwave meal together! The uncertainty of Bertie’s health and development was always on my mind, but bringing home a premature baby who has chronic lung disease and required 24/7 oxygen, who is so susceptible to illnesses and who is “failing to thrive” was and is, much harder. 

I cannot comprehend why being at home as a family would be harder than our time in hospital, but it is. I feel a huge amount of guilt for saying that, along with a lot of other things. Like not spending enough time with Charlie, not spending enough time with Bertie, not being a “good” wife, the list goes on. One of my biggest guilt is why couldn’t I carry Bertie to full term. I do know that it is not my fault and that I did nothing “wrong”, but I still feel guilt. I was told by a wonderful woman recently that we must accept our feelings and it is just how we feel. I am working on that. 

We’ve been home for 7 months now. In that time we’ve had 2 overnight stays in hospital, endless appointments with physios, occupational therapists, dieticians and Bertie’s fantastic consultant. Home visits from our amazing respiratory nurse, which always felt like a visit from a friend, but also difficult visits from health visitors who had little understanding of pre term babies. I feel immense pressure for Bertie to be “well”. I worry. I am swamped by worry. Worry that he is not developing as he is should be, worry that he will have long term effects of being premature, worry that I’m not giving him enough attention, worrying about his weight, worry that he might get ill again, worrying about more hospital admissions and worry that in all this I’m neglecting his older brother Charlie. Going into the winter is an exceptionally worrying time, a simple cold could put Bertie in hospital. It’s already happened twice and it’s not even been the cough and cold season yet.

In August, amazingly Bertie was able to wean off his oxygen in the day. Then in October he has come off oxygen at night too. This was a massive milestone for Bertie! I was so pleased but with this came more anxiety. The oxygen is almost a safety net, a comfort maybe. Take it away, it’s another worry. A huge ongoing battle for Bertie is his weight and feeding, he takes very little milk and has very little food. He has awful reflux which is not helped by a persistent cough. Recently we had a particularly bad spell and he lost weight. I feel like we go round in circles and it is never ending.

There is a massive lack of understanding and knowledge about premature birth, our babies and life after NICU. By sharing our story I want to help people going through the same and give knowledge to others. One of my biggest frustrations is that I feel a lot of people assume that just because we are home now that Bertie is “fine” and like a “normal” baby. I hope this at least goes a little way in showing this is not the case.

Along with guilt and worry, I am filled with jealousy. When I walk through the supermarket and see a heavily pregnant woman, I feel jealous that they’ve carried their baby further than I did, jealous that they will have a new born baby to enjoy and jealous that they don’t know about the NICU experience. I then I feel bad for having those thoughts and feelings. Another seemingly never ending circle that I hope with time will end.

I am grateful beyond belief to the wonderful NHS. It is still early days for me. I have two beautiful sons, I am so lucky, but also feel like I have lost who I am. In sharing our story hope to find myself again.

with thanks to Sophie for sharing her story, raising awareness of the ongoing needs of families following premature birth and neonatal intensive care.

 

World Prematurity Day – It’s Never Too Late To Speak Out

What can only be described as what should have been one of the best chapters of our lives started off as one of the scariest time of our lives.

It’s something you think could never happen to you. 

Delivering your precious baby 8 weeks and 4 days early. Completely unexpected, the baby you’ve been carrying, getting excited about, your new life ahead…. 

Then the doctors tell you ‘he’s a tiny 2.13lb’. 

They take him straight off you, they recusiate him, they put him straight into an incubator with a oxygen mask on. 

He was so brave, yet so fragile.


It’s the complete opposite, directly at odds with the feeling you had been expecting. 

I felt robbed of my pregancy. 

Robbed from everything I should have expericed. 

I felt like I didn’t get the chance to be and to feel like a new mum. 

Every day Ted was in the hospital we didn’t quite know what to expect or what we would be told on the ward round each morning. 

Ted was just 1 week old when the doctors called us aside to tell us he’d had a bleed on the brain. 

As young parents we couldn’t quite grasp everything at once, everything that was happening. 


He was struggling with his feeding, struggling to gain weight and he was so up and down. He then had the bleed on the brain, fluid on the brain and everyday was so different and daunting. 

We stayed in the Ronald Macdonald Suite in Arrowe Park hospital for around 5-6 weeks while Ted was cared for in the Neonatal Unit. They told us he would probably be kept in until at least his due date unless anything improved and it seemed so far away.


My partner Chris went back to work and I just continued to in the hospital, counting down the days. It was the most bizare time of our lives. We joked it was like living in the ‘big brother house’, but the atmosphere was so quiet and lonely. We knew everyone there were going through one of the toughest times of their lives and we didn’t really want to engage in one another, not knowing what news they had just recieved downstairs. 

The staff in Ronald Macdonald really couldn’t have been any more comforting and welcoming, and the doctors and nurses in the neonatal unit we can’t thank enough. We owe them so much, without all the help they put in daily we wouldn’t be where we are today. 

Weeks passed and Ted was jumping rooms from Intensive care to High Depenacy and finally into the last room ‘The Nursery’. 


The feeding tubes slowly came out and the hot cot was introduced. He finally started to look like what some people would describe ‘a normal’ baby, ones without wires or tubes all over there bodys, ones you aren’t scared to hold or touch. 

People think that once you leave the hospital it stops there, that everything goes away and it’s all happy. 

That’s not the case. 

I couldn’t shake the feeling from my stomach that someone was going to take my baby away from me. I guess a little bit of me still can’t now and that is where 8 months in it hit me like a ton of bricks. I suffered hugely with anixety, another thing I never really knew about before. 


Ted was one and we finally got discharged from the hospital all together. That meant no more appointments and we could put some of the memorys to the back of our heads now we weren’t going back to the hospital and being reminded. Being told they was more than happy with his progess and he could be discharged was another one of the happiest days of my life, we joke but Ted actually clapped when the doctor told us, right on cue! 

Here is Ted-Joseph our hero 2 years & 4 months on. 


A little man who walks into the room and lights it up – cheeky, happy and full of mischief!

I feel as a prem mum that it is NEVER too late to speak out about how you are feeling and you’re never alone. So many other people have been or going through the journey others have been on. Together we are strong. 

It’s NEVER too late to raise awareness for these tiny precious little miracles, the ones who pull through, and the ones who are taken too soon.

World Prematuirty Day is on November 17th – will you share Teds story and help raise awareness?

Poppy Hobs
If you have a story to share, contact Catriona at smallestthings@yahoo.com

My NICU Warrior

Guest post, by Tania, sharing her story to raise awareness through World Prematurity Month.

Our beautiful boy was born 11 weeks early on the 7th August 2016 weighing  a tiny  2lb 2. A week earlier I was abroad myself and my husband was out working in the middle east. Thank goodness I listened to my gut instinct and went to get checked at the hospital. I’d had reduced movements over a few days to none at all, so when I called the hospital they told me to come in straight away. I just knew something wasn’t right, little did I know what was to come. Within 20 minutes of me going in my little boy was delivered via emergency c section. Hearing those words “we have to deliver your baby now” at 29 weeks just didn’t sink in. I saw the colour drain from my husbands face as he said I’ll make phone calls to the family. Surprisingly I was very calm as I knew me being stressed wouldn’t help my baby but inside I was terrified, frightened and unaware of what was going to happen to my baby.

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The hardest part for me wasn’t all the doctors or nurses using me like a pin cushion, but the fact of not being able to hold my baby. After delivery he was whisked away. My husband was able to cut the cord and briefly saw him before he was taken to NICU.  I wasn’t able to see him for at least 12hrs after I delivered him as I had an epidural and I had to wait for that to subside.

Having a baby is suppose to be a joyous occasion and of course we we’re over the moon that we had created this little life…but it wasn’t a joyous occasion, we were supposed to be holding our baby and cooing over him, but instead I was placed on a post natal  ward listening to and seeing mothers with their new-borns whilst my baby was in intensive care fighting for his life in an incubator. The first time I saw him I couldn’t help but blame myself – was it something I did wrong? The one thing I’m suppose to do is to care and protect and to a mother, but that was taken away from me. It felt so unfair our baby wasn’t in our hands but instead being cared for by those in the neonatal unit. The only thing in my control and that was helping him to grow was expressing breast milk. I would be in the feeding room constantly expressing milk to be put away in a freezer to give at a later date.

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Each day we would go and see him. We would sit and watch him and over time we started hitting milestones – our first cuddle with all the wires constant beeping and noise of the high flow and everything else. It was a whirlwind of emotions, gradually our little warrior slowly came off each medical device and we moved in to high dependency. He was so strong and so determined which spurred us on to remain strong; if he could do it then so could we. After weeks of being in intensive care and high dependency we were able to move to the SCBU. I was so excited there I could actually feel like his mum and do the things that a mum is suppose to do for him.

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On Oct 3rd 2016 we were able to take our little warrior home and we we’re so excited. He is still having constant check ups with the neonatal team but he has done incredibly well. No-one truly understands how you feel or what has happened unless you’ve been through it. If anything has taught us how to remain strong in the most difficult of times and to never plan anything – he really is our special little boy.

Tarnia Lewis

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If like Tarnia you have a story to share, please contact Catriona at smallestthings@yahoo.com

Like Tarnia’s Story? Would like to help us raise awareness? Then please share on Facebook, Twitter – far and wide!

Mason & Teegan-Mae: Our NICU Journey

Guest blog post by mum of two, Sophie Willis, raising awareness as part of World Prematurity Month

I always dreamed of having a perfect pregnancy with a complication free birth and having immediate skin to skin with my new born.

At 35 weeks in July 2013 I was admitted to hospital with irregular contractions. I still had hope that I would make it to term – or as close to term as possible.
After a few days my waters broke and I went in to spontaneous labour. 2 hours and 51 minutes later I delivered a perfect little girl called Teegan-Mae. She weighed 1.990kg and was beautiful.

She was took to SCBU and stayed for 10 days with feeding difficulties, temperature control and jaundice.

Immediately after Teegan’s birth, I still longed for the perfect pregnancy and delivery. My partner and I always wanted more than one child so we decided to start trying right away.

Eventually with the help of fertility drugs due to secondary infertility, we found out I was pregnant in April 2015. My partner and I were over the moon, and was so excited for Teegan to become a big sister.

Despite having awful morning sickness, my pregnancy was perfect.

At 24 weeks I started to have contractions and went to my local hospital. I was examined immediately and given steroids – Ouch! I was transferred from Swindon to Oxford to be in a hospital with a better equipped NICU. Fortunately, the contractions had stopped and I returned home.

“I was worried sick, I felt like I was suffering a loss, I knew my pregnancy was going to end very soon. My partner, daughter and little bump was the only things keeping me going.”

At 28 weeks, I was admitted to hospital with contractions again. This time I was 2cm dilated and I knew this was it.
A few days passed, contractions still present and I had an awful feeling in my gut…
My waters broke and baby was in distress. I was prepped for a cesarian section where my gorgeous little boy Mason-George was born. He weighed 1.348kg and was born crying! Mason was transferred to NICU, where he was put on CPAP.

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The first week after Mason was born was my worst nightmare. He was very distressed and needed to be ventilated. He also had a blood transfusion, returned to CPAP and then went on high flow. We also learned Mason had a PDA and a hole on his heart. He also had an inguinal hernia.

“I felt awful leaving Mason every night, and also felt just as bad leaving Teegan during the day.”

The unit became our second home. I always thought my body failed him, so I wasn’t going to fail him now. I provided all his cares, belongings and spent hours at his cot side expressing for him.

I learnt so much about my little boy, he had many apnoeas, desaturations and bradycardias. He had multiple blood gasses, blood tests, transfusions and cannulas for antibiotics or IV fluids. He had medication daily, and I was able to feed him breastmilk via NG tube and attempt breastfeeding when he was big enough – although he took a long time to coordinate himself!

 

Mason required an operation for his hernia and his immunisations which we’re little set backs for him. His PDA shut without intervention which was a huge positive!

After 88 days in NICU, Halloween, bonfire night, Christmas, Daddy’s birthday and New Year – Mason came home 9 days after his due date.

The transition home was hard, no monitors, temperature checks, charting feeds or nurses for additional support. But we quickly adapted and found a routine which worked for us all.

During our stay in the NICU, I learned to take each day at a time. Each small set back made room for a leap in the right direction. As little as these premature babies are, they have courage, fight and strength like no other.

The nurses who looked after Mason while I could not be there hold a special place in my heart. Keeping my baby comforted, fed and warm when he should be tucked up in my stomach. They are present during the darkest time of many families life’s, but also the greatest times too. Such amazing people.

We have made life long friends while in the NICU, we could support and advise each other as we have that one thing in common!

I now have 2 happy and healthy NICU graduates. My little miracles.

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Raising awareness for prematurity holds a massive place in my heart. I knew nothing about prematurity until it happened to us.

Will you share Sophie’s story to raise awareness?

Have you got a story to share? Email Catriona at smallestthings@yahoo.com

World Prematurity Month – November 2016

World Prematurity Month, a time for charities, health professionals, families and organisations around the world to come together to raise awareness of the 15 million babies born premature each year.

For me, a mother of two small boys born too soon, World Prematurity Month is an opportunity to reflect upon and highlight the realities of neonatal intensive care; a chance to shine a light on a hidden world and a journey that lasts long after bringing your baby home from hospital.

As expectant parents you make plans, you allow yourself to dream and imagine.. the first hold, the first baby grown, the first feed…. but for parents of premature babies all plans and dreams are shattered as the trauma of neonatal intensive care kicks in. You don’t recognise the world around you find yourself grieving for a baby take from you too soon and placed within the protective walls of an incubator – “A womb with a view” as a friend once said.

Smallest Things

On leaving neonatal care, full of conflicting emotions, you think that your NICU time is done… only there are new challenges to face.

Incubators, life support machines and monitors are behind you, but the memories and worries last. One day you feel brave enough to leave the house. You might visit a mum and baby group – and that’s when then it comes, the dreaded question…

“How old is your baby”?

I know I’m not alone in rounding down my baby’s age and even then I would see the quizzical. I would tell them that my baby was 6 months old, although developing according to his corrected age he looked and acted like a 3 month old.  Next comes the dilemma; either explain that he was born premature and risk being asked often insensitive and upsetting questions or endure the inevitable developmental comparisons. I didn’t like the feeling I was making excuses for my baby – ‘he’s six months old, but really he’s only three months’ I would hear myself saying.

With the benefit of hindsight (and a bit of preemie mum strength), I might now tell those mums that my baby hadn’t quite mastered sitting independently yet, but what he had mastered in those six months was to teach himself to breath, to learn to co-ordinate sucking and swallowing, to regulate his own heartrate and that he trebled his birth weight – pretty impressive milestones I would say!

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Unless you’ve had a baby in neonatal care, or a close relative in that position, you have no reason to know about life in NICU, so I tried to brushed remarks like ‘I could never have left my baby alone in hospital’ or ‘is he normal now?’ aside, but they hurt and I felt alone.

Not only was it the mum and baby groups I began to avoid though, community health professionals, who I thought would be there to support me, also seemed to lack awareness. I lost count of the number of times I was asked if he was smiling yet. Each time I gave the same response – ‘he hasn’t reached his due date yet’! I was forever asking that his weight be plotted according to his corrected age and the six week check was laughable. I felt like putting a big sticker on the front of his read book saying “remember I’m a premature baby!” (Which is why, years later I developed the “Preemie Proud” Red Book stickers!)

I launched The Smallest Things blog two years ago, writing about my own experiences to raise awareness of premature birth and the challenges faced by families following neonatal care. This World Prematurity Month I will continue to write, as well as sharing guest blogs, about a journey that does not end at the hospital doors.

Raising Awareness really does help to make the Smallest Things matter – even if only to help with the dreaded “how old is your baby?” question!

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Don’t forget to follow The Smallest Things on our Facebook Page for all the latest stories and news for World Prematurity Month!

 

Smallest Things in 2015!

As we begin to set out our plans for 2016, make our New Year resolutions and look forward to what this year will bring, we reflect for a moment on what a year 2015 has been!

2015

Launched in June, our petition to extend statuary maternity leave has reached more than 11,000 signatures and has received national press coverage both in the papers and on the radio!

Our Facebook page has continued to be a hub for all things Smallest Things, with over three and a half thousand supporters reaching a wide audience every day – lets keep reaching thousands more in 2016!

On the blog, ‘Dads Do NICU’ was one of my personal favourites; highlighting the journeys taken by fathers and bringing to the foreground their caring role in NICU. Kangaroo cuddles and skin-to-skin with dads are some of my favourite pictures of 2015 and are worth another look!

Our most read piece, and by quite some way, continues to be ‘PTSD: The hidden cost of NICU’. If raising awareness of the lasting emotional impact of a premature birth is one of our aims, then this article is certainly helping to achieve that. Recent comments on our Facebook page, left by mothers years following premature birth, are a real eye-opener and sum up the vital need to raise awareness and the urgent need for more support for parents of premature babies. You can read their words and add your own here.

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Taking The Smallest Things to Parliament! In September Croydon North MP Steve Reed visited the Croydon University Hospital neonatal unit and is now championing the needs of premature parents in parliament. Speaking in a Westminster Hall debate for World Prematurity Day, Mr Reed raised The Smallest Things campaign to extend paid parental leave and highlight our 5 reasons why this change is needed. We were delighted when Health Minister Ben Gummer MP stated he would look into this very issue. Mr Reed also hosted a Smallest Things reception in Parliament and it was a great pleasure to meet many of you there. Mothers Ije and Sarah spoke movingly about their own experiences of premature birth and their ability to return to work once they were home. Sarah spoke moving about her twin girls Eva and Charlotte and their story remains a powerful reminder of why this campaign is so important.

The end of 2015 has ended on a high! With great surprise I was humbled to find myself alongside other amazing women long listed for the 2016 Tommy’s Baby Charity Mums Voice of the Year Award. It is a fantastic recognition of what The Smallest Things aims to do; giving parents a voice, an opportunity to share our experiences and to say loudly that the NICU journey does not end at the NICU door.

Saving perhaps the best til last! On the 30th December we had an opportunity to speak to millions of Radio 5 Live listeners as Sarah spoke about her beautiful daughters Eva and Charlotte and I explained the need to give families of babies born too soon more time through extended parental leave.

With your help and support we have made The Smallest Things matter in 2015 – thank you!

Catriona

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Sarah Miles and Catriona Ogilvy Radio 5 Live

 

Prematurity Awareness Month – 12 Months a Year!

WPD2014Today marks the end of World Prematurity Month; but for parents of babies born too soon the journey continues.

I have written about World Prematurity Day and what it meant to me this year; an opportunity to raise awareness and increase the understanding of a journey that does not end at the NICU door.

November was a busy month for us and if raising awareness is our aim then our cause has certainly been helped by programmes such as Miracle Babies. The channel 5 series filmed at Liverpool Women’s Hospital invited viewers into the little known world of neonatal intensive care. It provided a unique glimpse into the lives of tiny babies and their families, as well at the staff who care for them. I wasn’t quite brave enough to watch and know that other parents who like us have spent time in NICU also took the conscious decision not to watch as well. Feelings can still be raw even years later and emotions can come flooding back with just the beep of a monitor. What I did watch however was the reaction to the series on social media as well as reaction from the Gogglebox crew. 

Amazing | brave | emotional | I’m already in tears | I don’t know how they do it | I couldn’t cope if that was my baby | so sad | they’re little fighters | and so much praise for the staff and the wonderful work of our National Health Service.

The truth is when you are thrown into the world of neonatal intensive care you have to be strong and you have to be brave – you have to do it and you have to cope. And for those days when you’re not feeling so brave and on the days you don’t feel strong enough to carry on the neonatal community picks you up, lets you know you are not alone and helps you through the most difficult of times.

This support can disappear though when you leave NICU – “Even our friends don’t know what we’ve been through” commented a mum recently. This is true for many people, particularly once you are safely home. Friends and family will often think that everything is okay now, that all the emotions and difficulties of NICU are behind you. “Thank goodness that is all over” was a comment I struggled with. The find that unit congratulate you on you baby gaining weight and say ‘aren’t you happy you’re home’. When you meet your health visitor they don’t seem interested that your baby was born early and your GP is asking if they are smiling when they haven’t reached their due date yet! This is when I turned to Bliss and to their network of volunteers. I needed to find other mothers who understood what we had been through and what we were was still going through; and even now it is those mothers and those in the ‘virtual’ world who I take support from and hope I give support back too.

smallest thingsJust as the journey does not end at the NICU door, the importance of raising awareness does not end at the end of World Prematurity Month. Organisations, charities, staff and volunteers all play their part and this work must continue all year round in order to raise awareness so that parents are supported during their NICU journey and beyond.

NICU Journey Cloud – WPD 2014

This World Prematurity Day you have helped The Smallest Things to raise awareness of the difficulties and emotions faced by parents of babies born too soon.  So many of you shared with us the three words that best describe your journey through neonatal care. Here they are as part of our NICU journey cloud.WPD2014

Please do share the picture that you helped to create as an example of just how conflicting emotions can be for parents of premature babies.

 

5 Steps – Support The Smallest Things on World Prematurity Day

Raise Awareness!world prematurity day

SMTTurn twitter and Facebook PURPLE! – change your profile pictures for just one day and share our photo

SMTUpdate your Facebook Status – I’m supporting the Smallest Things campaign on World Prematurity Day. You can raise awareness too by ‘liking’ and sharing their page http://goo.gl/TJEn56

SMTTweet – I’m supporting @_SmallestThings on #WorldPrematurityDay – raising awareness & understanding of premature birth http://goo.gl/TJEn56

SMTShare our story

Campaign for Change! 

SMTWrite to your MP  ask them to support the Bliss it’s Not a Game Campaign to extend statutory maternity leave and pay for mothers of babies born too soon.

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Little Lights: A time to remember

Yesterday we took our two boys, born 3image0 weeks and 34 weeks to fundraise on the Bliss Little Lights Walk. It was beautiful and moving – you can’t really beat a candle lit walk around Tower Bridge for a location!

imageSigning up for the walk our plan was to raise money for a fantastic charity whose volunteers had supported me after we came home from hospital, and to remember our own journey and just how special our two boys are.

Rather than reflecting on our own journey though, I found that my thoughts were instead with the families who’s babies our no longer with us… and then watching our own boys that old familiar feeling of guilt kicks in; the guilt you felt in NICU when you thought you were at your lowest, only to speak with another mother whose baby was facing a much tougher time than yours. The guilt you had when you felt empty and as if you’d lost your baby, when you know that other mothers have lost theirs. And the guilt you felt when grieving for the lost time with your baby, that lost final trimester and the lost time to hold your new born, when you know that unlike some families you will eventually bring your baby home.

A journey through neonatal care is often fraught with conflicting emotions and it seems these emotions aren’t left behind when you leave the unit. Parents of babies born too soon have been sharing with us the three words which best describe their journey through NICU; loss, guilt and lucky are words that come up time and time again and are perhaps three words that best sum up the emotions of Little Lights Walk for me.

Brushing aside the guilt and embracing the emotions, you learn to live with them as an ex-prem mum, I enjoyed watching our two boys both still too young to understand what it is all about and felt so proud of all they have achieved; but as I watched the light reflect on the river I took some quiet time for my thoughts to be with the families whose babies did not come home from hospital and who remain loved in our hearts. We had a candle burning brightly just for them and they will all be remembered on World Prematurity Day.

How old is your baby? – What World Prematurity Day means to me

imageThis year for me World Prematurity Day is all about raising awareness of the difficulties and realities faced by parents of premature babies. You don’t really know what to expect when you plan a family and begin the journey of bringing a new life into the world. But for parents of premature babies the reality of life on a neonatal intensive care unit is so far removed from what you could ever imagine.

The journey doesn’t stop though when you leave neonatal care, at home there are new challenges to face. You finally brave it out of the house and visit baby groups – and then it comes, the dreaded question, how old is your baby? I know I’m not alone in rounding down my baby’s age and even then seeing the quizzical looks when I would reply that he was 6 months old even though he looked and acted more like a 3 month old (his corrected age). Next comes the dilemma; either explain that he was born prematurely and risk being asked often insensitive and upsetting questions or endure the inevitable developmental comparisons. I didn’t like the feeling I was making excuses for my baby – ‘he’s six months old, but really he’s only three months’ I would hear myself saying. Now, with the benefit of hindsight, I might say that he hasn’t quite mastered sitting independently, but what he has mastered in his six months is to teach himself to breath, to learn the suck reflex and to treble his birth weight – pretty impressive milestones I would say!

Unless you’ve had a baby in neonatal care or a close relative in that position you have no reason to know about life in NICU, so I tried to brushed remarks like ‘I could never have left my baby alone in hospital’ or ‘is he normal now?’ aside. What did get to me though was the response from health professionals in the community, those who I thought would support me but seemingly also had a lack of awareness. I lost count of the number of times I was asked if he was smiling yet – each time I gave the same response, which was – he hasn’t reached his due date yet! I was forever asking that his weight be plotted according to his corrected age and the six week check was almost laughable. I felt like putting a big sticker on the front of his read book saying “remember I’m a premature baby!” Most concerning for me though was the emotional support. It’s well know that mothers of premature babies are at an increased risk of depression and anxiety, yet if I became teary with the GP or health visitors they would quickly change the subject rather than explore my feelings. It was only when I became upset over something trivial and totally unrelated did the doctor ask me how I was really managing.

smallest thingsThe Smallest Things campaign was launched two months ago to raise awareness of premature birth and the challenges, both emotional and financial their parents face. Through sharing stories like ours, by speaking with local health visiting teams and GPs and through fantastic programmes such as Miracle Babies currently on television we can slowly lift the vail on the often secret world of neonatal care. Only by speaking truthfully and honestly about our experiences can we raise awareness one step at a time.

World Prematurity Day 2014 – Take Action Now!

imageCelebrated in over 60 countries, World Prematurity Day sees organisations from across the globe come together to recognise and raise awareness of premature birth. The Smallest Things campaign will be raising awareness of the difficulties faced by parents of babies born too soon and hope that you will join us in a day of action. With four weeks until WPD on the 17th November you can take action now!

  • Write to your MP – here’s how. Ask them to support the Bliss ‘Its Not a Game Campaign’ to extend statutory maternity leave and pay for parents of babies born early
  • Ask others to join our campaign!
  • Share our website and Facebook page on social media. You can follow on Twitter at @_smallestthings and tweet using the hastags #SmallestThings and #WPD

Details of our Day of Action 17th November 2014 coming soon….