12 weeks outside

I find it very hard to think "biology textbook" about baby development now. Instead of all the 'your baby is now the size of a small-but-perfectly-formed-semi-ripe-mango business all I can see and think is what I saw in special care. As well as being truly terrifying, it is a privilege to see what would be a foetus, but now a genuine baby, grow.

From 27+6 weeks, I saw my daughter develop. Not entirely naturally: for the first near two weeks she had machines to help her breathe (ventilator then CPAP) and from 31 weeks she started requiring oxygen again so had two enormous sticking plasters on her cheeks to ensure the nasal cannulas stayed on. She also had a feeding tube, right up until the very tail end of week 36, in time for home at 37 weeks (well 36+6 just to be clever). 

At birth she weighed 1090g (2lb 6oz) and at term she weighed 2385kg (5lb 4oz). By full term on her due date, she weighed a very respectable 3.3kg (7lb 5oz). 

I can only remember that period of development in emotion now. In grief, regret, tears and heartbreak. And shock, pure shock like a thick blanket. No precious kicks, no scan photographs, no lingering over first purchases of baby grows. No decorating the nursery, no showing off a growing bump, no excitement of choosing names. All that was done in a very intense and stressful situation instead, in a clinical environment with doctors, nurses, physiotherapists and beeps, always the beeps.

Our milestones were suddenly very different. Ventilators, IV fluids, antibiotics, diuretics, vitamins, caffeine, oxygen, feeding tubes, phototherapy, hot cots. And cuddles and cares. Snatched minutes of the day allowed to touch and interact with your child. The bliss of having them close, of your lips and hot breath tickling their fragile thin skin, breathing them in deeply to remember until the next 23 hours later...
 

Tiny no more

Recently I have been trying to do some sorting out. As happens when you have a small child, odd tiny socks and vests you never bought breed and end up EVERYWHERE. Today I found a wee bootie wedged behind the clothes horse and was momentarily caught stock still at it's size. It was so small. Yet it was easily that for a 3 month old child; needless to say it fitted mine up until around her first birthday. When I find these small items of clothing aimed at the first few months of life, I then have to further pinch myself to remember my baby was even smaller. Seriously small. At 1090g (just under 2lb 6oz), little bigger than my hands. Her eyes barely open, unable to breathe for herself and so frail. Her first picture a few hours after birth is a little shocking. I treasure it, but it is not a cute baby picture by any means. I love it because she is my baby but I can't quite imagine it on a board with other baby pictures of squashy newborns or even pictures later down the line of NICU.

When I find tiny things, I always have a pull to go back to our NICU memory box and find her first nappy, first dummy....so small, even for doll's clothing. I find it staggering to look at them and think that baby, my baby survived and thrived. That babies, some half her weight can too. I can't explain the pull to keep looking at these things, keep reminding myself. In many ways it is like poking at an open wound. God, it hurts when I think of the pain and suffering she has been through. The mental pain and suffering I and my family have been through. The scars we are left with.

I find myself afraid of forgetting, alongside paradoxically being desperate to move on. It has defined things for so long and is really my only experience of motherhood. For so long I wished we could have been one of the average statistics, the "normal", the tears-free, the one where you knew your baby would be there the next morning. Now two years down the line, we are in a little limbo. In part, it is oceans away. In part it is still with us every day in form of some problems or delays or memories. In a strange and not-entirely welcome way it has become my normal, which is what I think I am afraid of letting go of. Instead of doing all the things I expected to do as a mother, I did lots of hospital based things and seeked out people in similar situations for vital support. Now we are in a position to mix and match effectively, I find I often flounder. It feels disloyal, like we are turning our back on all we went through that made sure I had the daughter I have here today. Which is so silly; we all know children grow up, lives move on and people grow with change. Being able to do some "normal" things is homage to the doctors and nurses who fought alongside my special girl.

Sometimes prematurity, illness or additonal needs feels like a secret world, one you can only imagine until you suddenly have the key and being in that walled place is a thousand times more overwhelming and vivid. In some ways, life will never be the same again. "Prematurity is an experience no one really thinks about when they embark upon the adventure of parenthood. And it’s not one anyone wants. But once fate flings such a twist our way, we find ourselves part of the secret society we never asked to pledge." Finding tiny keepsakes feels like a mascot of this new club, a lifelong allegiance with a terrifying induction. It is less about clothes, or first dummies, just that these firsts are so different to the firsts we might have anticipated. But they are still firsts, to be cherished alongside the grievances. But it isn't easy. For the first year, I so wanted to forget. Now I can't bear the thought of forgetting.

Without Faith

I am not a religious person.I never have been, apart from a brief zealous period in the Brownies when I wanted to carry the flag in the Sunday School parade. I completed my A Levels at an Irish Catholic school which strongly resembled a spin off of Father Ted crossed with St Trinians; lessons were cancelled if a crucifix fell off the wall ("a sign"), classes were taught via the medium of various versions of Jesus Christ Superstar (I wish I was joking) and everyone generally ran riot. I was indifferent to the religious attitudes surrounding me day in day out, but really very fond of the community I was in. I became decidedly more atheist after going to university and encountering some for more militant religious types who thought that bullying others because they disagreed was acceptable. I know these were mainly in the minority compared to hundreds of gentle, caring soul but it was an unpleasant eye-opener. My family are not religious but my parents and sister quietly have their own beliefs which they follow in ways they feel comfortable with. My father had a slightly more traditionally Christian upbringing from what he says, but his own way of doing things is more insular and private. Many of my friends have faith, from the agnostic maybes to the very committed. I like the idea, but I just cannot believe. This is not just about religion though.

I often wondered that if faced with a dreadful situation, would I instinctively call on God, a God, any God, multiple Gods, to give me strength? Did I feel atheist because I had never been challenged enough in my comfortable life?

Sadly in January 2009 this was put to the test, when my father having contracted an aggressive infected that was shutting down his body and ulcerating his heart was rushed for emergency and life-saving surgery at a major London hospital. We were were a 33% chance of survival. As we sat in the waiting room all night for 6 hours waiting, watching as dawn broke and the smoke from the incinerator several floors belows curled up into the crisp new sky, I thought many things. I wished many things and hoped many more and worried about stupid stupid things. I wanted to find an inner strength, a inner connection, an inner belief. An all-knowing kind benevolence that could be a guarantee on saving the life of this intelligent and kind man who's life hung in the balance on an operating table, at mercy of the experience and capabilities of a team of surgeons we never met before, and at the mercy of even worse: chance. Chance has no compassion. Chance doesn't care about statistics or history. Chance strikes opportunistically.

But I found nothing. Nothing but blindless hope that I hadn't hours earlier spoke my last words to the man who gave me life and brought me up. I wished and I wished; to no one but the silence that cloaked us. When finally, we were told the operation had ceased and we must now watch and wait to monitor the success of that and the antibiotics, the wishing carried on. Wishing is probably the wrong word; it was to no one but for everything. It was a mundane disbelief that this could not be happening to the strong man I knew. Almost a deliberate lack of acceptance and a need to keep going, for if we did as a family, then he would too. And in April that year, he came home.

Many times afterwards, the odd religious friend who knew about the experience would say, "so surely now you believe, now you have been spared."

I'll admit, that made me angry. Being without the foundations and faith of religion, I did not see how I 'should' be a convert. Yes, my father had been saved. By the quickness of the NHS, by renowned doctors and clever nurses. By luck, maybe, but my precision and skill also. By the brilliance of modern care and the civilised world. If I was to believe, even if I wanted to, and goodness did I some bleak days, where was this omnipotent God when my father got that ill? Who, who saves, would let someone get in that situation in the first place? My atheism was more concrete than ever, although with a much softer edge and more understanding of those who did believe. The attitudes mentioned above did make me cross, but I understood how some people needed and felt healed by religion and their faith. Me, I found the things that got me through was not belief but monotony and memories. Memories of happier times and monotony must pay bills, must eat, must update relatives, must wash, must dress.

And then Wriggles came into the world, 12 weeks early on my bathroom floor.

And again, no God even so much as poked His nose around the door of NICU. If I had had a glimmer of believing, I might have done the religious equivalent of leaving him a sherry and mince pie to entice him into my life to give me some cheer and the best present ever, that was currently fighting in an incubator. But I didn't. I couldn't. Where I imagine some keep faith, was an empty box. A hole that was filled certainly with cautious hope as days ticked by, but not directed anywhere. Again monotony gave me strength. That and an-increasingly dog eared photograph of a little scrap that was called my daughter. In order not to be allowed thinking time, I tried to do everything under the sun. Including a spate at work in the middle of the NICU stay. Partly I was run ragged about finances and a very grey-area-ed work contract, but it also offered some salvation of not having to hope or wish or think or be guilty. Hello you're through to .... can I help you? I could just burble under the surface and then run, often literally, as fast as my legs would carry me through the city centre, up past St James football ground, through the park, past a&e and up, up the stairs into NICU where the world stopped turning again until I left.

She started to look like a shrunken baby, and then came home with me. Life started up again. Things fell into place, ironed out, I tried to forget, but even if I didn't, I had a very real reminder of the happy outcome. I could pick her up and carry her around and kiss her until she got fed up with it. And then suddenly I was in my third Intensive Care unit in two years. 

I didn't find anyone there. I didn't expect too. A little of my heart was feeling hardened to the testing and mostly, I knew that the one thing I had faith in didn't have magical properties or an all-seeing benevolence, reason and complex plan. She did have ten fingers and ten toes though. Having had a taste of "normality" was what drove every day into the next day. I could barely leave her side without feeling that the distance might bring us further apart not closer, so my set up vigil provided my hope. I was touched though by a little community drawn up for me by others.In absence of local family, my circle of friends outstripped any expectation and went beyond the call of duty to bring me food parcels, sit with me silently, bring me clean socks, provide a shoulder to cry on (not that I did. That would mean admitting how bloody terrified I was) and some times not leave until 3am in the morning because I refused to leave Wriggles' side. Until the point my mother arrived, and beyond that, all I had to do was mention something and it was done. If I ever needed belief in humanity and kindness restoring, it was now. They didn't do it because they had to or had been told to or believed it would get them to a better end, but because they cared. On my first mother's day there on PICU I received three cards all "by Wriggles" because no one wanted me to feel alone.

Now that is what I believe in. Love of the here and now.

Comfort

Wriggles has never been a massively cuddly girl. She has never particularly had a "favourite thing" either above anything else. The plus side of this is that that is one less panic when out and about (HELP I've lost so and so...and they've stopped making it!) but it does make me a little sad. I had a menagerie of stuffed animals when younger and always had one that trailed around with me. Even as a baby, I had favourites whose noses I chewed until they fell off (sorry Piglet).

My favourite of Wriggles' toys is Mouse. Mouse came on day 3 of Wriggles' little life and came as our guardian rodent that sat by her incubator day in, day out when I couldn't be there every waking or sleeping minute. When she moved into a heated cot, Mouse seized the chance and jumped in to, and has also slept in her bed since. She would have moved into the incubator had infection control not frowned on it! Mouse means such a lot to me, having "seen" with her stitched eyes everything I did and more. To me, she is part of the Beginning, which to look at Wriggles now can be easily forgotten about. Partly, I cannot forget it and partly I am desperate not to, as those early days shaped so much and when I brush the tears aside of the grief, trauma and unfairness of it all, I am so proud of how strong and brave my little girl is.

As well as Mouse, Christmas Hedgehog and Eloise-the-Rabbit also still sleep in her cot with her. These have both enjoyed brief dalliances with as being The Chewed Toy of the moment that would get flung about and piqued more interest than anything else. I suspect in time, they will be favourited again. I love the idea of having bedtime friends that are special to fall asleep and wake up with; a little separate world different from the frantic pace of the daytime.

I still have my own comforter; the filthy cat in the picture is mine that sleeps in by my bed. When Wriggles comes in to sleep with me or when she is poorly she often has the cat to chew or wallop. As it is quite old, it's limbs are a bit all over the place so perfect for "flying lessons" or holding onto tightly. It really needs a wash, and has lost all but one whiskers but neither of us seem to care. I love seeing Wriggles with my old toy-it is like it has come full circle in a way. 

Dear NICU

Dear NICU,

I am angry. So angry. I know I shouldn't be but there are so many things I want to say to you. Maybe it's not healthy nearly 2 years on but I need to get this off my chest.

You denied me my role of motherhood. You took away my basic rights as a parent. You can SAY I'm still the mum, but how was I really being a mum just sitting? Sitting and staring. Watching and waiting. That's not parenting.

Do you know how demeaning it is to ask for permission to touch my baby? Not even hold, but touch? And when told, albeit gently, no not now, no not today, how you snapped my fragile heart and stamped over it before brushing it aside for dead.

How patronising and sad it is to have cuddles put on a rota, as if it was another chore to tick off. 15 minutes a day; 3pm after cares.

How I felt as small as a gnat, no smaller, as worthless as a flea because I wasn't breastfeeding. I couldn't even do that and you didn't care. You didn't even say, don't worry because it wasn't important as long as my child grew.

You smashed every one of my dreams and preconceptions of my first child, my baby I will never ever recover or now live. My innocence was lost within hours. It doesn't matter if I go on to have another baby; I will never get those hours back with her.

You were rubbish at sharing. All those weeks and I could only visit. Every night I had to leave. Every night I had to leave my baby with someone else. Someone very kind and very skilled but a stranger. Every night I had to accept that someone else would comfort my baby because I couldn't be there to do it, and might get to hold her precious hands while I wasn't allowed.

You had the most important job in the world looking after tiny vulnerable beings that were each the centre of someone's universe and yet you had no compassion. Day in day out some babies would get sick. Worse, some might leave this earth. Why didn't you do something? Something more?

You weren't me. You might have cared for my baby but you will never love her and you took her from me when she needed love the most.

Kind regards,

but maybe not that kind,

Mouse

ps. By the way, thanks for y'know, saving my baby's life and looking after her. Thanks for giving her the chance to live so we could both be happy today. More than happy. Um. Maybe you could just ignore all of the above?

*screws letter up and throws it in the bin*

Sigh.

Choosing to See

One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.

I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.

I didn't.

"Are you sure?" a nurse gently asked. "It can be very distressing."

I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.

Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities. 

When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.

Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch? 


There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.


We were the lucky ones.


One minute thirty seconds.


It could have been so much longer.


It could have been so much quicker.


It could have been a different story altogether.

Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.

The Best Worst Place

Recently, I met a fellow neonatal mum face to face. We were introduced by a good mutual friend of ours and had both had daughters on the Tiny Lives unit at the RVI. Our daughters had missed each other by a couple of weeks. Her gorgeous 30-weeker, now 16 months old, was born due to placental abruption. Immediately, it was like we were part of a secret club with a code language. In minutes we swapped procedures, compared stories, established mutual acquaintances on the ward and compared favourite doctors and nurses. 

"It was such a wonderful place."

"So lovely; just incredible."

Our friend, with her term baby, looked at us as if we were mad.

We paused and looked at each other as if we were mad. And quickly looked away, a slight welling of the eye and a lump in the throat.

"A horrible place."

"The worst place to be."

The thing is, both things are true. A good NICU is the best worst place to be. If you're going to be separated from your newborn, you damn well want them to be in the best equipped place with the most high-tech machines and knowledgeable staff yet also with compassion. But of course, even the best NICU, the one with the friendliest nurses and the most intelligent doctors and the newest and sparkliest and beepiest machine is never going to be enough. 

Because it's not with you. 

You can visit, yes. But that is the hitch: you have to leave. Night after night, you have to walk away. Bye bye, baby. Does your child, wired up, know you are leaving? Know the difference between night or day? Know inherently that you should be there, forever and always? That is all debatable. But to you it goes against the very grain of parenthood. It is the strangest thing: you know it is the best place for them. But you also know, that it will always fall short and cheat you both of the most loving and most caring place: being there with you.

Commemorative Quilt

I've talked before about the importance of charities that support neonatal or indeed any hospital unit that can offer vital funds that will enhance the unit beyond the NHS budget and be able to prioritise family support, community care, extra staff training to ensure that knowledge is kept cutting edge and small details that seem insignificant, but to families and in-patients make the difference between a scary stay and bit of a fuzzy glow.

Babies should start their growing up at home with their parent(s) and families. However, for 80,000 babies this isn't the case and they will start their lives in a neonatal unit. Wriggles spent two months there, which although is heart breaking, considering how much longer some children spent, is barely skimming the surface. Too many people think that premature birth or sick children is something that happens to other people. Premature birth counts for 7.8% of the number of live births in the UK and up to 40% of those cases have an undetermined cause. In my city, 6,500 babies are born every year, and 600 from those and from other hospitals around the region and the North of England will pass through the neonatal unit, through intensive care, high dependency and special care. Tiny Lives our charity support the unit, including directly funding breastfeeding support posts raising expressing and breastfeeding to 95% and for two specialist physiotherapists who do vital positioning work which is especially necessary for babies in for extended periods of time. They also focus on family support and allow for items outside of the NHS budget to be purchased. 


To celebrate the marvellous work the unit does and the lives of the babies who have passed through since the unit opened in 1993, a quilt is being made by an events group supporting Tiny Lives. There are 93 squares being personalised by parents and a border of buttons are being sponsored by anyone who wants to support the project and from friends, families and businesses.

 So if you would like to get involved or donate, hop over and have a peek. Including Gift Aid, the total raised currently stands at £1009.18 which can be added to the total monies raised so far from the group which is £11,673.89. Hundreds of other people also raise thousands for Tiny Lives across the North East; having had a experience of special care makes an enormous impact on lives from the babies, parents, friends and family.

No parent ever plans to be on Special Care but when you have no choice, having a first class unit, dedicated team and a supporting charity to ease the financial burden, it makes a hard time much easier.

Text QUIL99 £1 (or any amount you like) to 70070 or visit the Just Giving page and we will sew a button on for you 

 

Born Too Soon

I started blogging as a direct experience of parenting a premature baby. It has become my personal therapy and a way of connecting with other parents who have shakily stepped off the rollercoaster and are beginning to think 'what the hell do we do now!'. Prematurity took over my life as it was overwhelmed and blasted my mental state into what felt like space. I felt so anxious for my child, so guilty for what she had been through and so disconnected from the real world. Born spontaneously at home before the paramedics arrived, Wriggles arrived into the world at 27+6 weighing 1090g (2lbs 5oz) and although took a breath, then crashed. She was rushed to hospital whereby she was resuscitated. They used a new research method of "cooling" keeping the body temperature low to protect the brain. The fact she had cooled naturally in my draughty bathroom whilst waiting for the team and was still attached umbilically is what I have been told saved her life and brain function. She was then taken to the RVI Newcastle upon Tyne and stayed there for ten weeks. A large chunk of my blog is about prematurity and the experience in neonatal and the effects afterwards, so for this fantastic Tommy's campaign I have decided to hand over the reins to Mouse, who came into our lives on day 2 of Wriggles' life and kept watch by the incubator and has slept with her ever since.

My name is Mouse. I popped out of a carrier bag as Wriggles' First Toy bought by her grandparents on Wednesday 15th September, 2010. I was presented to Mama who felt me very tightly and closely. I could hear her heart thudding away as she pressed me to her, desperate to find comfort in the strange new world. Later that day, we traipsed down the corridor hand in paw to meet Wriggles. She was in the Red Area (Neonatal Intensive Care) and there were 4 incubators in the room and two nurses. She didn't have a name yet, just Baby Girl [surname]. By this point she had come off the ventilator and was on CPAP which was attached to her face with a little grey hat. The huge CPAP tube was nearly as big as her face. She wasn't very big; maybe a little bigger than I was and definitely thinner. My little stuffed arms and legs looked so chubby next to her bony limbs. But we looked at each other, beady eyes to beady eyes through the incubator, pressed against it. I'll look after you. I'll be here when your Mama cannot be. She trusted me with the biggest job of all to keep you safe and keep you loved. Because Wriggles was poorly I was not allowed inside the incubator as part of infection control, but I sat on the top or next to it. I kept Mama company during the long hours and hard times and helped her keep a diary. Her memory was so fuzzy I had to help prompt her a lot, and she would cling onto me as if I was her baby, as she couldn't do so with Wriggles. NICU was an odd place. There were always people everywhere and everything was conducted with speed and a sense of urgency whilst trying to maintain a blanket of calm, yet depsite the hustle and bustle it was very lonely.

First day in a cot

We spent a total of ten weeks in the neonatal unit. Other babies and their companions like me came and went. Most of the babies were born at a later gestation and spent far less time in. Some were there for a fortnight, some a little more. In the Green Room we graduated into, we got to know another extreme prem baby girl, E and her guardian toy Bear. Me and Bear got on well; long into the night we would whisper over the tops of the incubators and keep an eye on each others little people. One day, E had a nasty bradycardia and apnoea moment and went purple, needing stimulation. Bear stood poised in shock, willing E to regain breath. She needed some stimulation. Afterwards we were on a high alert, like guards waiting. It was a stark reminder how changeable things are even when they seem to go well.Only a few days later, Wriggles herself had a nasty turn twice in a row and was taken back to HDU to be kept a closer eye on. She had tests taken to see if there was an infection brewing. The HDU was less lively; although there were more doctors and nurses, the atmosphere was more somber than the nursery room which could be quite jovial. I missed Bear, who I could laugh with. Mama was much more worried after relaxing, and would keep vigil until her last metro home some nights. She would sit by the cot, watching Wriggles sleep. I think she wished she could swop places with me, and be cosied up next to Wriggles, touching her fragile skin. I would smooth it with my soft paws and let her clasp her tiny fingers round me. After a few days and an improvement, we were allowed back into the nursery but to our distaste, our 'spot' had been taken over and we were relegated next to the bins. Yuk!

Around 34-35 weeks

Everyone expected Wriggles to kick the oxygen habit she had developed. She had been so clever at coming off the ventilator and CPAP relatively quickly, it was a surprise when her oxygen requirements began to rise. The nurses kept trying, but within minutes the alarms would ring out. Bear gave me a sympathetic look over the room. E's feeding really took off, and she and Bear went home when we had been in around seven weeks. It was quite sad without them. Mama and E's mum used to talk merrily through the day and chat with the nurses. All the babies we knew had gone home, so it was just me, Wriggles and Mama. Wriggles was finally learning to suck and swallow and taking tiny amounts of bottles. Just 10ml at first daily, but we built it up. I was so proud! After the third air challenge failing, it was decided that she would go home on oxygen. Things got very busy with forms to sign, oxygen to order and Mama to calm down. She was taken off to learn resuscitation and first aid and talked through using oxygen. Before we knew it, it was time to room in. Mama looked so proud, wheeling the cot with me and Wriggles in. The three of us settled into our little room. I did some gymnastics while Wriggles napped-it was all just too exciting!

Rooming In

We finally came home on Monday 15th November at midday. Mama's friend R came with us and snapped pictures to put in an album to treasure. It was such a surreal day, walking out. I was tucked up with Wriggles in the carseat. Mama had found me a tiny new knitted hat so I could have something to keep me warm against the brisk November air. It was hard to imagine that when I had come in September it had been warm and still! Mama had brought Wriggles a furry suit with ears so we could match, and it was so big she looked swallowed up! She looked so confused going out. I whispered that it would be alright, that we were going somewhere where Mama would never have to leave us again.

Going Home

Too Exciting

So, settled at home we were in bliss being all together again. Every morning, Mama looked so dazed as though she couldn't believe her luck. I noticed a crushed photograph stuck to the wall by her bed-I guess it was the next best thing to sleep with when Wriggles was far away across the city. Since coming home, we have had lots of highs and some lows. We have had adventures like going to the park and learning to sit up and some scares like dashes to hospital where Mama would unceremoniously shove me in a coat pocket! Although I got a bit squashed, I was glad to come along for the ride. I started out life as being Wriggles' protector and guardian, and I don't intend to give that up easily. Even though she is now FAR bigger than I am and has learnt to stand up, giggle and play peekaboo, I will always look out for her and remember the humid, quiet nights as I watched her grow and develop as if still inside her Mama. She turned into a real little girl, from a scrawny newborn and I feel privileged to watch her fall asleep and wake up every single day.

At home, around 37 weeks

Growing up, 19 months old

Wriggles was one of the lucky ones. Preterm birth (before 37 weeks) is the number one cause of mortality for newborns and is the second leading cause of mortality in the under 5s, second only to pneumonia. Premature birth is one thing that is not specific to poorer countries, although economic and social circumstances do play a part. It is a worldwide problem and one that is one the rise. Every year, 15 million babies are born too early and of these, 1.1 million will sadly die. Many others will have substantial problems relating to prematurity. In the UK, there is a current rate of 7.8% of live births being premature and this is estimated to be increasing at a rate of 1.5%. The UK is ranked 46th out of 184 countries when looking at their premature birth rates. I personally found this surprisingly high, but then considering there are around 60,000 premature births per year maybe I shouldn't have been. All of this is frankly, rubbish and the really rubbish thing?

It could be prevented.

There are a known number of factors which increase premature birth that should be implemented either pre-conception or addressed as early as possible. Women and their carers need to be empowered with the right information to look after themselves and their developing children. No one wants to face the prospect of losing their child, so things need to step up to ensure that all women, across the world have a better chance of carrying to term. 15 million is too many. The Born Too Soon report is the first of it's kind, bringing international figures together and uniting in a new goal to halve the mortality figures by 2025, a goal championed by the UN.

 

 

Join in the Twitter party between 3-4pm today if you are in the UK, using the hashtag #borntoosoon tweeting with @tommys_baby.If you have written a post about premature birth or the Born Too Soon report, then linnk up at Not Even A Bag of Sugar.

A Tale of Two Halves

It always strikes me as shocking that in this day and age, 2012, there is still such a split in the world and such a marked difference in high-income and low-income countries. There are many complexities to this and the stark difference means there are often two very different sets of statistics.

Each year, some 15 million babies in the world, more than one in 10 births, are born too early. Of these, 1.1 million babies will sadly die. The tragedy is that of this number, 75% could be saved in developing countries with inexpensive care. For the smallest and sickest babies, intensive care is often unavoidable but it is not necessary for all preterm babies and there are many options that could be explored to save lives.

The figures from the report show the split between between countries. Of the 11 countries with preterm birth rates over 15 %, all but 2 are in sub-Saharan Africa. Preterm births account for 11.1 % of the world's live births, and 60% of them in South Asia and sub-Saharan Africa. 

In the poorest countries, on average, 12 % of babies are born too soon, compared to 9 % in higher-income countries. The problem of preterm births is not confined to low-income countries-the United States and Brazil both rank among the top 10 countries with the highest number of preterm births. The UK surprisingly also comes in only at 46th (7.8%)  in a poll of 184 countries premature birth rates per 100 live births.

In wealthy and developed countries, the increase in the number of preterm births are linked to the number of older women having babies, increased use of fertility drugs and resulting multiple pregnancies. In some developed countries, medically unnecessary inductions and Caesarean deliveries before full-term have also increased preterm births. In the developing world, the main causes of preterm births include infections, malaria, HIV, and high teenage pregnancy rates as the body is not yet fully ready to carry children of their own. Infections and malaria could be managed and prevented with better available healthcare and more frequent antenatal monitoring and education to both take care of expectant mothers and warning signs of preterm birth to watch out for. For any woman, it is all too easy to brush things off and think "Oh, it's nothing. There are more important things to worry about today" and we can all but imagine when these important things are pressures such as keeping a roof over your head.

In low-income countries, more than 90 % of extremely preterm (born before 28 weeks) babies die within the first few days of life, while less than 10 % die in high-income countries. That is such a huge difference. Having spent two months in a neonatal unit, it is heartbreaking when a child looses their fight. To think that in another country, to expect the majority not to pull through is a sobering thought. Too often we think of these premature babies as figures, as tiny helpless beings that are just not strong enough, not well enough, not grown enough. But each baby, around the world is that: a baby. A baby, a new life, a sign of potential. A loved child, a child with a family who care and will grieve. A person that will be remembered forever. This is not the same as debates about the ethics of termination when the foetus is barely more than cells, this is a baby born alive with the chance of making it.

Experts say that inexpensive, proven forms of care for premature babies could save at least three quarters of these babies in the developing world. These include:

• Antenatal steroid injections for mothers in premature labour, which cost $1 an injection. This helps develop immature foetal lungs and prevent respiratory problems; yet, in low-income countries, they are only available and provided for 10 % of those in need. This alone could save almost 400,000 lives of babies a year. They are given far more frequently in high-income countries and many parents put the survival and health of their premature baby down to receive either one or both of these corticosteroid injections.
  
• "Kangaroo care" where the infant is held skin-to-skin on the mother's chest to keep warm. The warmth is very important for premature infants. This could save 450,000 lives a year.
  
•  Antiseptic cream to prevent birth cord infection.
  
•  Antibiotics to prevent and fight infection, an important cause of neonatal death.
  

Ecuador, Botswana, Turkey, Oman and Sri Lanka have halved their neonatal deaths from preterm birth through improving care of serious complications like infections and respiratory distress. These interventions are particularly effective in preventing death in moderately premature (32-37 weeks) babies, which account for 80% of all premature births.

 "This report is not the last word, but an important next step," says Dr. Howson, who helped compile the report. "Both the report and the broad international constituency behind it offer a framework and set of clear actions to help accelerate global progress on preterm birth.”

The goal is to halve neonatal mortality rates by 2025, and commit to furthering research and promoting better care pre-conception and in the antenatal period. As the saying goes, knowledge is power and the more tools we have to empower women and the health professionals caring for them, the more we can put premature birth and mortality back into the past where it belongs.

Neonatal Charities

As well as large and vital charities like Bliss among others, many neonatal units up and down the country have their own smaller charity attached that supports both the unit itself paying for medical equipment ontop of the NHS budget to ensure the units remain cutting edge, contributing to research projects, looking after parent and family welfare, paying for extra staff and providing support for the families be they in for a day or 6 months.

My local neonatal unit is at the Royal Victoria Infirmary, Newcastle-upon-Tyne. Ward 35 houses the intensive care, high dependency and special care rooms that make up the unit. It cares for over 600 babies a year born anywhere in the Northern region and at any one time can take 34 babies. It is one of the bigger units in the UK and last year, won the Big Heart (by Mother & Baby magazine and Bliss) award for Neonatal Unit of the Year; not a prize taken lightly when you think of all the fantastic units that save lives every single day. It is by sheer luck that it is my local unit. After university, I applied for jobs liberally and it just so happened my first offer was in my university town of Newcastle so there I stayed in a city suburb, before my daughter came along very prematurely in a matter of a few months. Because of the size of the unit and the specialist Intensive Care it provides, it meant we did not have to be transferred, potentially many, many miles away like many families.

Fiona

In the last few days I have had a letter from my old paediatric social worker Fiona, telling me that our file is due to be officially closed. She has said she will always be happy to reopen the file and will always be happy to give advice off the record but as we have been without complex medical needs for over six months, for now that is us done and let loose into the big wide world. Although we have not been reliant on her for a long time, it still feels a bit like taking the stabilisers off.

I was first assigned Fiona when Wriggles was less than 24 hours old. In my NICU unit, all parents with children under a certain gestation or those that for one reason or another were clearly going to have an extended hospital stay, automatically were given a health-based social worker. This aggravated many already fragile parents at first, assuming that the referral was a comment on their parent skills or social status, but as it was stressed by the kindly team it was actually to support us and make the neonatal ride easier. I don't know if this is uniform across neonatal units or if it is a service that everyone would welcome, but personally I found it a lifeline. Fiona became a confidant, friend, financial adviser, fundraiser, housing officer, counsellor, advocater, personal organiser and voice of reason at very low times.