Out of the Mouths of Babes

Out of the Mouths of Babes

Kids can be so cruel.

As a primary teacher at an all-girls school it’s a phrase I hear often. Sure, kids can be cruel sometimes. But in my experience more often they are honest and open and full of wide-eyed care.

Despite this I was still a bit nervous when I took Hero into school to meet my students last week. I’d started my maternity leave early, half way through the summer term, so my girls knew that things hadn’t been entirely straightforward with the pregnancy. I was really keen for them to see that everything was all ok.

I’d decided not to prepare the girls before I took Hero in to meet them. Their gasps of delight and joy at seeing her were spectacular. Their excitement was punctuated after a few moments by the startled question: “What’s happened to her hand?”

And there it was, the elephant in the room evaporated instantly in a poof of smoke. The elephant that lingers so often when adults are taken by surprise. After the first girls asked, the others started to notice her lucky fin too and repeated the question.

I explained that we’d found out about her paw while she was still in my tummy and that sometimes things just don’t develop the way we’d expect them to. That’s life, that’s just nature.

“Will it grow?”

“Are those fingers?”

“Does it move?”

It was so wonderfully refreshing to be asked questions and to answer without any awkwardness. As soon as they realised that it was all ok; that I was OK and that Hero was OK, their attitude to her lucky fin changed from curiosity and concern to wonder and joy.

“Can I touch it?”

“It’s so cute!”

“I love it; it looks like a teddy bear’s paw!”

“She has teeny tiny nails! She’ll be able to paint them when she’s older!”

One of my girls, who is just nine years old, looked up at me as she held onto Hero’s lucky fin and said with such honesty and integrity: “She is such a special little girl! A real one of a kind.”

Often the difference between children and adults is that children aren’t afraid to ask. And if you’re not afraid to ask then I’m not afraid to answer. Of course I can’t speak for any other parents with a limb-different child, or for the children themselves, but for me I welcome the questions. There’s no such thing as a silly question. Once they’re asked, once we’ve said farewell to that elephant, we can get on to talking about other things.

Being different is nothing to be ashamed of and in approaching differences with curiosity we can open our mind to a whole new world. My girls showed me that last week as they sent Hero and I on our way, our hearts bursting with happiness.

 

Welcome to the World Little One

Welcome to the World Little One

After of months of acute anxiety, pre-natal depression and insomnia, Hero Gwenhwyfar was born on 5th August, and all of my worries literally melted away.

After emerging from my initial Darth Vader-impression-laden, drug-induced, haze I couldn’t help but smile. It was all over, everything I’d been worried about; all of it happened. It was the total and utter opposite of my impeccably detailed birth plan, yet none of it mattered. Not even slightly; it was all ok.

After inhaling and swallowing her own poop on the way out, Hero was whipped away from us within moments and taken up to intensive care on the neonatal unit, where she would spend the next six days receiving the best care possible while I recovered and pined for her on the ward above.

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I’d been secretly worried during pregnancy that the first thing I would want to look at when she was born was her hand. Parents at Reach assured me that that wouldn’t be the case, but secretly I doubted them. However, when she was placed in my arms, hooked up to a myriad of drips and monitors, all I could see was her absolutely perfect face. Her perfectly squished nose. Her perfectly fluttering eyelids. Her perfectly imperfect hand was the last thing I turned to.

Her hand was perfect. She has the ‘nubbins’ I was so worried she would. And despite all my fretting, all my stewing, I love each and every one of them. Since escaping the hospital, and the absolutely faultless NHS care we all received, there’s been the odd hesitation or double-take when people have met her. Each time it’s taken me a couple of moments to realise what they’re double-taking at – all I see when I look at her is perfection and I forget that others might see something else.

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There have been tears. I’m a hormonal first-time mum with a newborn, of course there have been tears. But in the 9-days since she arrived in our world I’ve only cried once for her missing hand. As I’d put my fingers against her she had tried to curl her little paw around one of them. She was trying to hold onto my finger, but there was nothing to hold on with. So yeah, there have been some tears, but not nearly as many as I was expecting. Now she’s arrived I see clearly; my girl isn’t disabled at all. She’s differently-abled and that’s something for her to be fiercely proud of.

And unexpected positive of her dramatic arrival was that the Paediatrician needed to X-ray her lungs. While she did so she X-rayed Hero’s little arm and her spine. They ruled out, once and for all, the chance of her diffability being a result of genetic issues. They ruled out, in short, anything more serious being wrong, the very worst-case they’d warned us about as they floated the idea of a termination after our 20-week scan. After that it was difficult to worry much about her at all. She was in the best of hands, and her rosy cheeks told us she was in the best of health, despite a little meconium on the lungs! Far from worrying about her, every time I saw her I was more confident of her health. After months of being told she’d be tiny, she’d be weak, she might even be seriously ill, I found it was almost impossible to worry overly about her when she had proved all of those fears wrong even in the first moments of her life.

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What’s in a name?

Another pre-birth worry, which has so far amounted to nothing, was about her name. Hero Gwenhwyfar.

We picked out the name Hero when I was just 16 weeks pregnant. We’d bandied about so many possibilities for her name, but after seeing Shakespeare’s Much Ado About Nothing for the first time, the name Hero just stuck. It seemed to cover everything we wanted it to, it was feminine, yet strong. It was Shakespearean, yet classical. In short, it was perfect.

Then we’d found out about her hand. I panicked. Obviously we couldn’t name her Hero any more; people would think we’d named her that because she was disabled, because she was our “Hero”. When I voiced this concern to Ben he dismissed my worries out of hand.

“Are you going to treat her any different just because she’s missing a hand?” he asked me. Obviously my answer was a resolute no. So why then would I start by changing her name because of it? Let people think what they will. She was ‘Hero’ before she was missing her hand, and she’s ‘Hero’ now.

So with the anxiety fading away, with the depression evaporated, we are absolutely loving life with our tiny, beautiful, perfectly imperfect daughter and we can’t wait to see all the ways in which she’ll amaze us as she grows and develops over the coming months and years.

Welcome to the world little one, you could not be more welcome.

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Celebrating the Mini Milestones

This week has been a week of mini milestones in the Though She Be But Little camp.

Tomorrow our pregnancy hits 37 Weeks. That is officially full-term in baby language, so our little lady is free to make her grand entrance any time from now and we’ll be over the moon when she does!

Today was also our last ever appointment with our foetal medicine consultant. A pretty momentous occasion. I’ve lost count of how many scans we’ve had since our 20-week routine scan way back in March, but I’m pretty sure it’s reaching the high teens, if not well into the twenties. It was an odd feeling to say goodbye to her today, knowing that post-natal care and investigations will be handled by a whole different raft of professionals. It felt like something big, a huge achievement, like both we and Baby have graduated somehow. The scan showed that Baby is growing well, and despite my sporadic lack of acceptance, that her right hand definitely isn’t there. The sonographer said again that there might be some kind of digit, but without much conviction. I’m not sure if they just say that because they think that’s what I’m wanting to hear, but we don’t have long to wait to find out now.

We got a great shot of her chubby face. I have to admit I was the only one in the room who couldn’t see it at first, until I realised that I was looking for a face a whole lot smaller than the one on the screen. I can’t believe how much she’s grown and I can’t wait to meet her for real, rather than seeing the sonographic equivalent of her face pressed against the glass!

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Don’t panic if you don’t see it right away, I didn’t and I’m her mum!

This week has also seen a turn about in my mind. Throughout the pregnancy, exacerbated but not caused by the complications, I have suffered with severe anxiety and depression. An intense fear of birth (not helpful when you’re pregnant) has raised it’s ugly head time and time again and it’s only through reading as many Hypnobirthing books as I can get my hands on, combined with support from my specialist midwife and my foetal medicine consultant, that I’ve managed to create a positive ideal in my mind. It was my first midwife appointment today, after 9 months of appointments, where I was able to speak confidently and with positivity about my impending birth experience. Daily meditation and banning myself from negative readings, attitudes and thoughts have both played a huge part. Gaining the self-confidence to know for myself what information I do and don’t need and what birthing attitudes are simply detrimental to my mindset has been invaluable.

Another event that put the stoppers on the train tracks of my negativity was a baby shower. My friends and family came together for the most amazing day and threw me a baby shower in the stunning Tudor manor house of Kentwell. It was absolutely tipping it down, monsoon levels of rain, but underneath that awning, surrounded by my friends, it couldn’t have been brighter. One of the symptoms of depression I have suffered with has been a sense of isolation, of inherently being unlovable. These sensations are incredibly difficult to maintain when the people that mean the most rally around you like that. I’ve still not managed to adequately thank them for everything they’ve done and I’m not even sure they’re aware just what a significant impact that day has had on me. The whole weekend was topped off when I got home the following day to find that Ben, he of the inappropriate humour, had called in the troops (his brother, sister-in-law and my cousin) to decorate the bathroom, the nursery and to get the living room prepped for the decorators after a well timed bathroom disaster a few months ago. The entire weekend served to spring board me up onto a more positive level that everyone, from my husband to my midwife, has noticed. I just wish I had stronger words than ‘thank you’ to offer everyone involved!

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The Baby Shower Crew (minus 2!)
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The mother of all cakes!

With Baby’s nursery finally complete we now have a room to put all her things in. Knowing that, should she arrive tomorrow, we’d be able to function has been incredibly cathartic and made it all really very real. I’ve been living in a surreal bubble of disbelief for the past months. I know I’m pregnant (it’s difficult not to with her booting me wholeheartedly in the ribs all day) but the idea of actually having a baby has been illusive. Now I find myself drifting into the nursery at every opportunity and it’s the one place in the house I feel calm and at peace –I figure that’s a very good sign! I’ve been practicing my daily meditation and Hypnobirthing mindfulness sat on my birthing ball in there each day. With any luck, some of that serenity will linger in the room and she’ll sleep like a dream. One can always hope!

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The week is still only half way through but the icing on the top of the cake will come on Sunday, when my hockey team captain, Kimberley, hits the streets of London to run the Vitality 10k to raise money for Reach. She’s been training incredibly hard, no matter the weather – not even letting trivial things such as holidays interrupt her! Her amazing effort has seen us raise £380 for Reach so far, a total that continues to rise.

All money raised goes directly to Reach – a charity offering invaluable support and guidance to around 60 new families each year who’s child is born with an upper limb difference, or a ‘diffability‘ as I now like to call it.

  • £25 – Pays for a comprehensive Welcome Information Pack for one family. (Our pack was an invaluable source of support to me a few months ago – thank you so much!)
  • £30 – Covers the hire of a one-handed recorder for one year. (Worries about whether Baby would be able to learn a musical instrument have proved to be unfounded!)
  • £50 – Buys gadgets to help a promising swimmer to train through our Bursary.
  • £75 – Allows a child to spend one day at Reach Activity Week.
  • £100 – Is the cost of one workshop leader at the family weekend, to provide the children with fun, safe and interesting activities.
  • £250 – Pays for a child aged 10 -18yrs to attend the residential Reach Activity Week – an invaluable source of friendship, acceptance and fun.
  • £500 – Pays for a Reach member to have essential adaptations to their car so they can learn to drive.

A huge and heartfelt thank you to everyone who has donated so far and supported Kimberley throughout her training. Also a massive

THANK YOU

to Kimberley, for all of her hard work, dedication and training towards raising such an awesome sum of money!

We’re wishing her the best of luck (and weather!) on Sunday as she pounds the streets to ‪#‎Runthecapital‬.

 

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‪#‎ItsAbilityNotDisabilityThatMatters‬

 

The Choice Illusion

Today was the first of five NCT antenatal classes. We were both a little apprehensive. Ben was in full dodgy-humour mode and I was my usual cantankerous-self.

In a way our fears (although neither of us were sure what exactly we were nervous about) were simultaneously realised and eased. Just being around and meeting other people in a similar situation to us was a breath of fresh air. Everyone was friendly, welcoming and impartial, the tutor was excellent.

As the weeks tick by and my mind is starting to wander to the birth, I was fascinated to learn about the different hormones that play a part in the birthing process. With a particular anxiety around birth (something I’ve had pushed from my mind of late) I’m developing a keen interest in the concepts of Hypnobirthing (I took great umbrage at Ben’s concern that it may just all be “mumbo jumbo”) and other meditative strategies to keep myself calm during birth and to keep the good hormones flowing.

At the course it all turned a bit for me when we split into groups to discuss the myriad of different birthing options available to us. Nothing makes me want to stick two fingers up at my pregnancy more and when people start discussing our choices. I spent the first half of the pregnancy completely unable to even consider the thought of my baby and unable to look past the apocalyptic event which I viewed the birth to be. This, coupled with existing anxiety, spiralled out of control into me being diagnosed with “pre-natal depression” (I’m completely sure that I’d be in a much stronger position now, despite everything, if I’d not started from an already shaky  foundation!). It was isolating and frightening and, at the time, I’d been unable to find anyone else who felt quite the same way as I did.

That all changed somewhere in the middle of the second trimester when my new midwife brought up the idea of giving birth in a midwife-led birthing centre or even having a home birth. I had absolutely no idea up until that point that I’d had a choice outside that of giving birth in a hospital. As simplistic an idea as it may sound, it completely transformed my life at the time. I had gone from feeling like I was trapped on a conveyor belt with no means of escape and that it would all end, one way or another, in a hospital to suddenly finding myself leaping out of the trap and being handed control of the whole birthing experience.

I was liberated and totally and utterly excited. I could, after all, have a “normal” birth. I could be in a place that didn’t send my heart rate rocketing and those chains tightening in my chest. For one idyllic month I was making plans to tour the local birthing centres with my midwife, something I’d shown absolutely no inclination to do with the hospital maternity wards. I was excited again about Baby’s arrival, I no longer saw birth as the end of the road, but as the beginning.

Then the 20-week scan happened and my luxurious choices were lost to me. If I was (as the consultant put it) insane, I could definitely give birth in a birthing centre. But that it was strongly, strongly advised that I gave birth in a hospital. This, despite my attempts to convince them otherwise, was confirmed by every other consultant, midwife and paediatrician we have since spoken to. Those choices felt like a distant dream, and an illusion.

This has led, over the past six weeks to me feeling that I simply don’t care about the birth any more. So long as baby is safe, it doesn’t exactly matter any more what I want. It’s turned into an intense apathy. I don’t want to tour the hospital maternity ward. I don’t want to read any books on birth. I don’t care even remotely if I have a water birth or not, something that people keep bringing up. What does it really matter any more?

Perhaps this sense of being robbed of the choices I’d been so utterly transformed by and relieved to receive is where a lot of my anger lies. It’s an anger that I’m not aware of most of the time. It’s an anger that seems to bubble up any time we do something officially baby-related; scans, hospital appointments and, apparently, NCT courses too.

It’s an anger that’s the driving reason behind refusing any further scans or check-ups from now on. It feels almost impossible to feel entirely normal about the whole pregnancy ‘thing’ when any expectations you might have had have been wildly different to the reality. From 24/7 sickness, to depression, to anomalies. It’s been one thing after another that tells me that reading “What to Expect When You’re Expecting” is an utterly pointless exercise. Unless of course, you’re able to expect the unexpected. Something I hope we’ll be a lot more adept at should we have a second child!

This is a good point to stress that it’s not all bad, of course. I am acutely aware how much worse things could be. How much worse so many others have to go through, over and over again. I feel privileged, lucky and blessed when I think of the alternatives. However, those little gremlins on your shoulder start nibbling at you as you’re surrounded by other, less complicated, pregnancies. It gnaws away at you as you realise that you still have two months to wait, two months more of this anxiety and this cheerful pretence. Two months more until we’ll receive the best gift we’ve ever been given. It’s like being a child again, watching the clock in apparent stasis on Christmas Eve, feeling that you can’t possibly survive the torment of the wait until the next morning, all the while knowing that you have no option and savouring the excitment.

I thought it was very telling about our current mental state when, at the end of the session, we were all asked to pick one word from a whole raft of words to describe how we were feeling. As everyone went around they shared their words: ‘hopeful’, ‘empowered’, ‘confident’, ‘excited’ and ‘informed’. ‘Tired’ was the most negative word to come up. We picked anxious: Anxious and hopeful (impatient wasn’t an option). I know which one was running stronger as I left.

 

Trying to find a little peace of mind

I know that my baby will be ok. I know that she’ll overcome the hurdles of being born without a right hand, with a smaller right arm. I know that she’ll rise to the occasion and live a beautiful life. I know that right now, nestled in my womb, she has absolutely no idea that anything is even ‘wrong’. She won’t know that there is for years to come. So despite knowing this, why do I feel so shit? I feel like I’m trapped in a washing machine on full spin, like my emotions are a turning kaleidoscope. I’m swinging from laughter to tears, to rage. I’m swinging from feeling absolutely fine for days on end, to snapping rudely at people who wind me up in public and not always fighting the urge to just bloody hide from it all.

I’ve been sat thinking about writing this blog post for well over a week. I have trawled the internet in search of the key, of the confirmation that it’s OK to just feel this bad right now. Unfortunately, most of the posts geared at parents whose limb-different children are already in their arms. They’re super positive, as they should be, as I know I’ll be too once our little girl arrives but which I simply can’t cope with right now.

Right now, she’s not in my arms. She’s not here to prove to me, day by day, that everything is going to be ok. She’s still just an idea, just a bubbling sensation in my tummy. Her very absence, our inability to hold her and see her, is what makes all this so difficult right now. What else might be wrong? Does she have any other issues we haven’t picked up on yet? What will her arm actually look like? Will it continue to grow; will it be stunted and shrunken?

I think that I want, for the first time in my guarded life, to step out from behind my well-armed defences. I want to do this in a bid to help me to understand my own thoughts and emotions and I want to do this just in case, on the off chance, that it might help someone else going through something similar in the future. Perhaps this little shard of honesty might let someone else know that it’s OK to feel rubbish while your pregnancy, which every scrap of media tells you should be perfect, has been derailed by a bombshell tossed in from left field.

GUILT.

Guilt is my arch nemesis. It wakes me up at night, it leans in over my shoulder every time I feel, well, just about anything. When we first received the news at our 20-week scan, compounded by the (mercifully unfounded!) worries that there could be significant other life-threatening issues, I felt guilty that I’d done something wrong. That I’d eaten too much of something, or not enough of something else. That I’d had a drink or two the night before I found out I was pregnant. Was it because I’d lifted heavy objects in my stubbornness to carry on as normal despite the pregnancy? Luckily for me, I have a very direct consultant who told me in no uncertain terms that none of the above was the case. And luckily again for me these irrational, but by all accounts totally normal, feelings on guilt passed swiftly for me. Nothing broke my heart more than when my husband (who is my absolute rock) admitted that he felt he’d let his daughter down before she’d even been born.

While that painful first stage passed quickly, the guilt didn’t go away, it simply changed shape and form. The guilt became about my own feelings. Every time I felt happy in the early days, I felt guilty. My baby is not ok, how on earth can I be feeling fine?

Then as the weeks wore on, and we received the good news that Baby’s brain, face and heart were all ok, the guilt started picking on me for feeling bad. We had the wonderful news that Baby was going to be ok in all other respects than her missing hand. So why, why the hell, did and do I still feel so rotten? When we first found out about the hand my predominant feelings were of shock. Followed by the sweeping statements that “so long as everything else is ok, we don’t care about a missing hand.” Now we’ve had as close to an all-clear as we’re going to get I’m as surprised as anyone to discover that actually, I do care about a missing hand. I care deeply that my little girl, the one I’m supposed to protect and support, is going to have bigger hurdles to get over than we’d imagined. Despite the constant reassurances that she’ll be fine, that she’ll be normal, that she’ll adapt, there’s simply no escaping the fact that she’ll have all of those ‘every-day’ hurdles to get over, but also plenty more of her own.

I feel guilty because, if I know that she’s going to be ok, does that mean that I’m actually upset for myself? If I’m upset for myself, and for my husband, does that make me a bad parent? Am I being selfish?

I know, with more certainty than I’ve felt before, that I will love my daughter to the ends of the earth and back. I know that her missing hand will do nothing but increase my love, my devotion and my passion for her well being. I know I won’t care a jot when I look at her – other than to mourn for her loss. Her loss of opportunities. Her loss of choices. Not all opportunities. Not all choices, but still some, maybe even many. But I know that I will do everything in my power to ensure that my daughter is a confident, proactive young lady with a sense of self-esteem I am often missing myself.

As comforting as this certainty is, as confident as I feel about her life post-birth, I just can’t shake the wobbling sense of uncertainty, of depression, which can see me crumble into tears within seconds. If I know she’s going to be OK then what right do I have to feel blue?

When people have so much worse to power through, when people receive the news we had dangled in front of us but mercifully dodged, how and why should I feel so upset about a missing hand? The guilt of knowing that things could have been so much heart-breakingly worse. Yet, also knowing things could have been better too. Things could have been perfect.

GRIEF.

I guess that grief speaks for itself and I had to try incredibly hard not to explore my feelings of grief in the guilt section, and in a way it was impossible not to touch upon for at least a second. But the grief that I feel, that I share with my husband, is the chief trigger for the guilt. The two emotions are inextricably linked. They are the ying and yang of my emotions. Where one arises, the other inevitably follows.

It’s the grief for the loss of our perfect child. The one every film, every pregnancy app and book tells you that you should have.

The grief is all about the little things.

The realisation that my wonderful, excited and deeply caring husband will not automatically be able to share his lifetime loves of violin and hockey playing with his child.

It’s that moment when you watch a friend’s small child grappling their two perfect hands around a toy and you realise that your daughter, however normal, however confident, just won’t be able to do it that way.

It’s that moment when you both stop and realise that you and your husband won’t be able to hold your daughter’s hand at the same time.

It’s that moment when you realise that, no matter what the consultants say, no matter what you tell your friends, you are not going to ‘enjoy’ another moment of this pregnancy until you have your little girl tucked up safely in your arms.

It’s a grief that she will not only have to overcome all the normal hurdles and troughs of childhood, but that she’ll have a whole battalion of her own demons to fight as well.

It’s knowing that one day she’ll come home from play group, school, a friend’s house or college and she’ll slam her door in frustration and she’ll just cry because of the injustice of it all. Because someone said something, because she couldn’t achieve something she wanted to, because she’s just goddamned different. And when that time comes, it’s knowing that you’ll feel every ounce of her pain but also have to hide it well enough to help her sail through that storm.

It’s the fear that, whatever you do, however hard you try, you won’t always be able to shield her from that. It’s the conflict between wanting to let your daughter know that she is perfect just the way she is. That she can do anything she sets her mind to. But that, from time to time, it’s OK to feel angry. It’s OK to feel let down, it’s OK to feel frustrated and sad.

HOPE.

And then there’s hope.

There’s the hope of knowing that we’ve been lucky enough to have been given three and a half months to prepare for her arrival. Yeah, that’s a little tough for us right now in our swamp of uncertainty, but for her that’s pretty damn awesome.

For her it means that when she arrives she will have two parents who’ve come through the shock, who have considered as many eventualities as they can and who have put support networks in place for her right from the outset.

There’s the hope that we receive from other parents out there who reassure us, day by day, that we’re all going to be ok. The hope we have already received from REACH – Association for Children with Upper Limb Deficiency and their community: that our little girl is going to be just fine. It’s the hope we find in the personal accounts, the blogs people have taken the time to write, in the picture books some kind soul saw a gap in the market for.

It’s the hope I find when I watch Finding Nemo that despite having his ‘lucky fin’ there was nothing that Nemo couldn’t do. And in that same vein I hope with all of my considerably deeper heart than I realised, that our little girl will feel the same and that even when the time comes that she doubts herself, her mum and dad will move heaven and earth to get her where she wants to go.

Let’s start at the very beginning

Let’s start at the very beginning. It’s a very good place to start, or so I’m told.

My husband and I are expecting our first child; we could not be happier, more excited or more filled with excitement for the future.

Despite our age, we are both of us still children ourselves at heart and the idea of having a little human, a little piece of us, to share all our bubbling enthusiasm with is something we’ve always dreamt of.

The first trimester was rotten (why is it that no one ever warns you about that?) It was dogged with 24/7 nausea and vomiting for about two months. It was characterised by impressive bloating, which left me looking five months pregnant and sheepishly buying my first maternity trousers at 7 weeks gone.

It was marked by the 12-week scan, by my total inability to live up to everyone’s expectations that I should cry with joy. The scan was nothing to me, if not a reminder that I had not and seemingly could not connect with my baby.

It was pursued to by an almost crippling fear of giving birth, a fear, which, left unaddressed and subconscious saw me diagnosed with pre-natal depression. It saw me assigned a new midwife, trained to deal with, well, with ladies like me. We talked birth plans. We talked options. And between her and my stalwart counsellor, we came through that bleak patch.

Cue the golden month. That glorious four weeks; my bump was showing and I was glowing. My energy was back. My fear was dampened. The toilet was no longer my closest companion.

We talked baby names, we talk nursery decorations, we talked about what our little lady was going to be like.

We were bursting with excitement when the 20-week scan came along. Out of the woods of the first trimester, this was going to be the one. We’d find out whether my hunch that I was having a daughter was correct. We’d finally see her fully, more than just the cartoon-like blob of the 12-week scan.

 

The 20-Week Scan

We arrived (my bladder fit to burst after a morning spent dedicated to my water bottle). The Sonographer could see our excitement and reminded us that she needed to be left alone to concentrate so that she could carry out all the necessary checks on our little one. We held hands and grinned at each other as we saw the little one bopping and jigging on the screen.

We couldn’t tell from our uneducated view, that she was curled up like a pretzel, her head hidden down in my pelvis. I was dispatched to the lavatory and we came back for a second attempt.

Still no luck; baby was moving like a trooper, but not in the way our Sonographer wanted. Off we were sent for a walk around the hospital, for a few glasses of water. At the time I was so touched that they were trying so hard to accommodated us, I had after all explained that getting time off wasn’t easy for my husband and that I’d probably have to come back alone if we couldn’t complete the scan today. I’ve since heard that many women have been banished from the room for ‘The Walk’ after an anomaly has been spotted.

When we returned the technician looked quite unhappy. I was worried that we’d walked for too long and had outstayed our welcome. Hindsight is a wonderful thing.

The third scan was equally as unsuccessful in yielding results. My poor bladder had been up and down like a yoyo and it didn’t seem to make a blind bit of difference to the little wriggling thing in my belly.

The Sonographer hung up her tools, defeated. Then turned to us and told us that she had “a concern”. Baby appeared to be missing her right hand. The left, it turned out, was also proving difficult to pin down.

That’s ok. Sure it is. I had thought for a minute it was going to be something serious. But a missing hand and an unformed limb? Sure, no problem. My husband was white.

We were not to be sent back to work, instead we were dispatched immediately to the Fetal Medicine Unit (our favourite anagram at the time, as close as it is to the terribly appropriate FML).

They sat us in a family counselling room and brought us tissues. I realised then that they think this is a big deal. Then I cried. My husband did too.

The problem, the FMU midwife (sent to deal with us as the consultant was on annual leave) explained to us in no uncertain terms, was that the Sonographer had been unable to scan baby’s face, brain or heart due to her difficult position.

(We’d come out of our shock long enough to ask about the gender. If we were going to process what was to come, we wanted her to have an identity. There were “no boy parts” they said.)

This, combined with the lack of any obvious causes for a missing hand (i.e. amniotic bands), had led them to believe that there was a possibility of a far more serious genetic problem. A problem that could result in severe metal disability and severe limitations on her quality of life not to mention the likelihood of this occurring in future pregnancies being a mere 4 to 1. The midwife brought up the issue of the legal 24-week abortion cut off limit.

We were referred to another hospital, an hour away, whose consultants are some of the top FMU doctors in the country. Today was Thursday. Our appointment would be on the following Tuesday.

The speed with which they referred us was simultaneously reassuring and terrifying. They were taking this seriously. Seriously enough for us to feel in capable hands, yet a little too seriously for our peace of mind.

As the weekend passed in a bit of a blur the shock began to crack and the fears started to sink in. The worst-case scenarios bounced around my head like sugar plum fairies. We could hardly eat. We barely slept.

The idea of having to even consider a termination, having just spent the day bonding with my daughter, watching her dance and punch about in my tummy, was the most unbearable contemplation I’ve ever had to make. She was no longer an anonymous fetus. She was no longer just a swelling in my belly. She was my daughter. She was feisty. She was stubborn. She was awkward. She was little, but she was fierce.