The story is reproduced as told by Natalie at the IMUK (Independent Midwifery UK) National Conference in November 2016.
They say there are two sides to every story. I’d like to start my story with that idea.
On the one hand, there is the spiritual side. On the other, the very human, pragmatic side.
On the human, pragmatic side, what happened to us was heartbreaking, unfair, and horrible.
On the other hand, on a spiritual level, what happened to us was an amazing privilege. An opportunity to look after someone who can never repay you, and to stand with them on the precipice between life and death, witnessing them pass straight through this dimension into the next. Someone who has made ripples in people’s lives throughout the world without even so much as taking a breath in it.
This is the story of my son, Evan.
In March 2013 I was pregnant for the first time. With a mind full of the natural wonder of books by Ina May, Michel Odent and Sheila Kitzinger, I learnt early of the primal quality of birth or rather ‘unlearnt’ the cultural fear, and knew I’d want to give birth at home.
I wanted the same midwife from start to end, and as the NHS doesn’t offer continuity of care I chose Virginia, an independent midwife, because she seemed very much on the side of 'normal', empowered physiological birth with plentiful experience of successful home births. I also chose not to have further scans after my 12-week nuchal scan. Pregnancy progressed fine, we travelled and were happy and worry-free, but at 32 weeks when Virginia felt my bump to be on the small side, she recommended a scan.
Fearing I had not consumed enough food, or drank enough water, the scan report came back, ‘can not see the kidneys or bladder'. I didn’t understand at first - could they just not *see* them? Stumbling to type the alien words into Google: ‘baby no kidneys’, I got my first insight into the awful, 100% fatal scenario of bilateral renal agenesis, absence of both kidneys, part of Potters Syndrome. Another couple of scans confirmed the worst: our baby was ‘incompatible with life’.
A rare anomaly with no known causes, with varying reported statistics averaging at 1 in 10,000 stated by NHS. BRA happens in the earliest stages of development when the kidneys are supposed to develop in weeks 6-7 of pregnancy.
This meant that there was no fluid around him because he did not have kidneys to fill his bladder and make urine (I refer to 'him' though did not know sex till birth, but we read that 80% of Potter's syndrome babies are boys). It also meant his lungs were underdeveloped as a result, and he was overall small with restricted movement. I was reassured by Virginia and by hospital staff that our baby's condition, and lack of fluid, was not of any risk to me and that he could go on till full term, although internet research suggested he could come by 36 or even 32 weeks. He would die at birth or shortly after, first because he would not be able to breathe, and ultimately because he could not survive without kidneys.
Well, we were were numb with shock and disbelief. Had we done something wrong? We’d both been eating well 18 months prior to conception, I’d been shipping in from America the finest prenatal supplements I could get my hands on, whilst there are pregnant women out there puffing fags regardless - how could this happen to us?
Our first worry was, can we have healthy babies at all? it seemed as though this condition was an absolute fluke, we just pulled the 'short straw.' It'd likely be fine next time.
After another conclusive scan, we sat in a cold empty room in the foetal unit with just a table and a box of tissues, Virginia's words 'you still have to give birth to this baby' echoing in my ears.
Back home, cold-sweating and disoriented, I laid on my couch wanting to wake from this bad dream. Looking up at Virginia, fear began to pervade my body and I asked her questions about going to the hospital. How could I possibly go on nourishing this life inside me? I could have an induction, then an epidural, and painlessly push out my tiny baby. All those medical things we never planned for, now seemed like useful tools to detach me from this horrid experience. I want my baby cleaned and wrapped before I look at it, I said.
Both Virginia and Matthew were ready to support whatever I wanted. Virginia consoled me that next time, I would have my beautiful home birth, I could keep this birth as a separate experience. 'We just want to get you through this unscathed', said Matthew. ‘No guilt’ said my neighbour.
I could not eat much for a few days after diagnosis, I wore baggy t-shirts to hide my bump, couldn’t touch it. After admiring it for months, I couldn’t even bear to look at it. My baby couldn’t move that much down to the lack of fluid and growth, but when he did move, it shot me in the heart with sadness. Telling our loved ones was very painful... my mind still plays the ‘oh NO’ from my mum on the phone. This was supposed to be our gift of new life to both our families, the first new baby in a long time.
The 2 weeks following the diagnosis were the worst part of all, the classical music I’d played to my bump, was now a haunting mournful score on repeat inside my head, and in preparation for induction, I read outloud scripts given to me by a hypnobirthing teacher, that described taking my baby to a lovely, most magical colourful land and leaving them there in beautiful peace - oh it sickened me really - I did not want to leave my baby in some stupid fairyland, I wanted them to stay, stay with us, I looked at Matthew and wept for the baby who would look like him, but who would die, I felt awful for Matthew, the pity for him felt even worse than for myself.
Once the shock faded a bit, I at least wanted to research the medical procedure, which still affected my own body, and future. All that pro-nature reading had deeply re-programmed my attitude not just to birth but to a holistic lifestyle - so the idea of going into hospital and being poked, prodded, and pipelined with catheters gave me the heebie-jeebies. Fear made me want to block it out with an epidural, but I was concerned there were women online complaining of headaches days later, and backaches years later. Who would be waiting for me at the hospital afterwards to help me out with that? Weren't we supposed to be looking after my body for the next pregnancy? Drugs would not take the pain of sadness away. Natural birth would be optimal for my health, but could I wait for it, could I face that? Should I let the hospital take care of me? I was confused, wanting to run to the safe place, but I found that the safe place kept changing.
Also, the hospital wanted me to have feticide before induction, which means to end the baby’s life by injection through my belly, into the womb and into the baby's heart or cord. I was uncomfortably aware it seemed to be more for their convenience and legalities (their words were 'if the baby's born alive we'd have a paediatrician trying to resuscitate'), though they portrayed it instead to be for my benefit, ‘the kindest thing I could do for my baby'. I would go up to London from Kent, to have a needle injected to 'stop the baby's heart' (or 'send it into arrest' depending on your choice of language), then sit for a bit and get re-scanned to check it worked. What would I do during that time, read a gossip magazine? What about the hours and hours afterwards at home with a dead baby inside me? Imagining it moment by moment, I just couldn’t see how I could go through this, the idea of injecting my baby just seemed worse than anything so far.
Mothers choose this route because they want to protect their babies, but I deeply doubted I could do it. The cause of death would be feticide, not BRA. And what also bothered me is that although they described it as an early induction, but in the paperwork it was called a 'late termination'. The pill I would be given was a low dosage of what’s colloquially known as 'the abortion pill'. Mere semantics maybe? But how would that mere semantics affect me in months, years to come? I knew that I’d probably say NO right before the needle went in. Why bother going?
The hospital had feticide booked for me at Kings’ College 4 days after the news - I truly believe this is far too soon for any woman to make this decision. Of all the hospital professionals, Virginia was the only one without an agenda, the only one telling me to take my time, that I had any choices at all. She pointed out I’d been given an ARC leaflet about termination, but not the ARC leaflet about continuing your pregnancy. If I wanted induction without feticide, I can have it she said. I thought, I have my whole life to live with whatever we choose to do. Whatever the best way was, I knew no decision should be made through fear.
Hesitation, aversion to going into hospital, and downright pity for the mysterious little stirring limbs in my belly made me put off one Kings’ College appointment after another. What I realised was that love was overcoming fear, maternal instinct was shining through, asking when does life begin anyway? What is a life? Does life in the womb count? We all die in the end anyway, so should I be cutting my baby’s life short?
There was a pivotal moment where, having wanted to learn more about epidurals, I looked at a video on the ‘One Born Every Minute’ website showing one being administered. Watching it, I thought, the atmosphere was curiously morbid and surgical - for a live baby birth - what hope does that give me? I felt like I had a menu of medical options, but it confused me trying to choose , and I wanted to rip the whole thing up and take birth into my bare hands. Simply, I wanted to give birth how I’d always planned.
Virginia had consoled me in my earlier panic that 'you can open those books again next time' but I opened them again now. I read my favourites, Ina May's Guide to Childbirth, Orgasmic Birth, and Spiritual Midwifery - in which I flicked onto a story about loss, where a mother had to induce a stillbirth but the mood around her hospital bed was strangely more cheerful than the live healthy babies being born in a detached, conveyor belt fashion in the adjoining cubicles. The woman described all birth, regardless of situation, as a ‘holy’ event and I gradually began to understand. My baby was going to die, but as Virginia said, 'what doesn't change is love'. (Funny, because Virginia says to me now, ‘she didn’t have a clue what to say’ - she was in a situation she’d never been in before. She just went with her heart, and those heartfelt responses were what I needed).
Many evenings I spent online reading stories of loss from other mothers from throughout the world and time, (there was even a group on babycentre called ‘Carrying to term despite Potters Syndrome’ - how very specific! which helped me consolidate my inner desires, even though no-one’s situation has been quite like mine.)
‘BE NOT AFRAID’ read the title of a religious website about carrying to term, and even though I’m not religious, I felt instinctively drawn in a moral sense to the same sentiment, even though I still at that point daren’t fully admit to myself... I read about women who carry their ill babies to term and give birth naturally and hold them straight away in their arms, doubted that I could do it, but a voice inside, one that my fearful self wanted to ignore, said, actually could I? I had a long chat with a female neighbour over tea and chocolate and the warm glint in her eye confirmed to me that I could do what I secretly wanted to do. A wave of peace came over me as I told Matthew, I'm not going to Kings’ College. I got a spring in my step 5 paces ahead of him on the way to the pub that evening.
I found I got braver in the face of it, stroking bump and telling him to ‘take all my love for you and do good with it wherever you go next’, that 'I'm here to look after you all the way through', to 'come whenever you're ready'. Duty. Speaking to my baby like that, it was duty that massively eroded the girlish first-time-birth fear, even made me feel like a warrior. At first, I was asking Virginia how easy my baby will be to push out, might he tear me, will it be easier because he's small? and so on. I felt pity for my baby the more I asked these questions, so funnily enough, by saying them out loud, it helped me resolve them. I decided I don't care how big or small he is, or fear tearing, I’ll give him all my strength and determination!
I’d call Virginia, once even late at night, for comfort I’ll forever be grateful for. After all the books I’d read I even asked her how a baby fits through the vagina! I liked the simplicity of her sweet and simple responses and when she said with a sigh 'oh, labour's not that bad, Natalie', I decided to stick those words to the front of my mind, above all the other things I’d heard from women about how bad and hard labour was supposed to be.
At about 36 weeks we went in for a fourth and final scan at another hospital. Scans really unsettled me but I wanted to know that everything was on track in this 'new normal'... I laid on the bench holding both Matthew and Virginia’s hand, sweating, terrified, unable to even look at the screen - I bet the assistants were wondering how the heck this girl was going to get through labour if she can’t even have her stomach touched with a scanner...
All was confirmed again, 'no kidney tissue at all present'. Baby still in the correct position, strangely enough the words 'right above my cervix, ready to come anytime', gave me reassurance that my baby was ready to corkscrew his glorious head through me, an inner voice said to me 'you must be mad', but I still smiled with anticipation. Dare I still like the idea of birth, I asked myself? I texted my sister saying 'I'm excited', she replied 'that's good, I'm still an aunty.'
Through my days, I wrote a lot online and got virtual support from other people too, always expressed myself fully, to anyone who’d listen.. plus cream eclairs, junk TV, and silly jokes pulled me through the days. I kept busy with the everyday bits and pieces I do as a photographer with joyous tunes like Jive Bunny on YouTube for baby to enjoy whilst I worked, and would pat him to every melody whilst Matt and I huddled to watch films on the sofa. (Funny enough we shared more snuggles than most new parents get time to manage!). My belly became less of a taboo and it was part of 'the family' again, although bittersweet. I went out a few times on social occasions, normal and jolly.
I even returned to where I'd got a prenatal massage previously at 5 months (that thought would have horrified me at first!) to enjoy it once more with my baby.
There were many sad moments too. There was one evening when in the pub, Coldplay's 'Fix You' came on. I could have wept till my head fell off. Another time, alone by a fence on a bridleway, I wept deeply, overcome with the awful prospect, of how could this little thing in my warm belly be soon inside the cold ground?
But every night offered me an oasis of deep sleep and thankfully no disturbing dreams. It was so good just to climb into bed, escape the world and wake floating on a calm cloud. Just one more night without labour, and another, and another, I'd think to myself. Just sleep, and forget it all, I told myself, I'll deal with it day by day. One night, it seemed bizarre, but, should I sit down and read aloud to my baby? So I did.
I took a childhood Enid Blyton book from the shelf sat on the couch and started to read. And I would do this nightly, rubbing my belly with low slow words to feel Evan jiggle in response, and it helped me be so happily present in the moment.
There was one evening where I got scared Evan wasn't moving. I was mortified at the thought of being alone... of going into labour like this... i thought, don’t leave me now! A little later after a glass of cold water, he moved and all was fine, just to be back in the same place, waiting for labour as normal, gave me great, strange joy as deep as any I'd felt in my wonderful pre-diagnosis pregnancy.
I'm glad I took pictures of my bump in the latest stages (even though I felt reluctant at the time, from feelings of failure and anti-climax) because I treasure them now.
And I wondered at the time if I should wait till after birth to write deeply about how I felt, but I'm glad I didn’t, because writing what I felt in real time was important, proving that the fearlessness was real and not dependent upon how the birth went. It gives me confidence now for other things I can set my mind to in life.
Frustratingly, we came to some medical hurdles. Professionals intervened on the idea of homebirth, basically saying that if my baby is born alive - which he could be - a doctor needs to be able to be present during labour to certify death, otherwise I would have to agree to a post mortem. In other words, a doctor would need to be present during the birth, and could not just turn up after birth because they need to ‘meet the person alive’... even though we’re talking about a baby, and even though the baby has been officially fatally diagnosed! Madness.
The doctor who rang me to tell me this put it bluntly - either give birth in hospital, or accept a post mortem if baby’s born alive - implying she would not be around for my birth. We didn’t want either. I wanted a home birth with no lurking doctor and certainly didn’t want my baby’s body unnecessarily cut open.
The Coroner rang me to reiterate all this and that his hands are tied, and I was so despondent. So we had a few days of worry, until things were resolved by Virginia fighting my corner, finding another doctor at my practice and mediating with the Coroner to finally agree that in the event of a live birth the doctor could turn up *afterwards* to certify death. Unneeded stress over, I got on with awaiting labour.
After our daily walk round the orchard I’d be swirling my pelvis around on my birth ball watching Top Gear, dismayed my labour signs were subsiding. I was 41 weeks pregnant now and I couldn't find any information online about anyone being pregnant so long with a baby with BRA, as many come by 36 weeks, some even earlier. Evidently my body hadn't 'recognised' the issue with the baby and was carrying on as normal. Maybe the signal for labour comes from their lungs, but baby’s lungs were not developing normally, so what do we do? The more time passed, the more unique I became. A woman at the end of her pregnancy normally feels lonely; I felt even lonelier! Keen to choose natural ways to bring on labour, we made tender love, the 3 of us alive together... a memory to hold in my heart forever.
At 42 weeks fear had long gone - I was now mentally urging labour on. I tried castor oil, got diarrhoea and nothing. We looked at our options - we could go into hospital for a pessary, and we could come home straight afterwards with or without their consent. Luckily, that never happened. Evan got the memo at 43 weeks with a sweep on the couch one morning from Virginia. She opened my cervix up to 2cm and felt his head. It was surreal to know she'd touched him. Almost immediately I felt subtle cramps beginning and soon, red discharge.
I had some more castor oil to throw everything I could at it, and we settled down on the couch to watch 'Rock of Ages' awaiting all the cramps to come. I was interested to know how the start of labour would feel and I definitely felt in a different 'mode', skin tingly, my groin sensitive like on a period, yet I felt so calm and at ease. I have comical memories of Matthew saying, 'take your mince pie and your contraction counter and go sit in the bedroom... you can't be ready to give birth, you've still got your trousers on!'
By early evening I was trying to get some rest next to Matthew in bed, moaning with surges some soft and some hard, with the strange feeling of my cervix creaking open.
All the books I'd read had deeply altered my experience of birth. All I needed was to be in my own environment, trusting my body innately, glad to be in labour, and deep down, steered by love for my baby. By text message I kept in touch with Virginia, who was not yet here as both she and Matt thought I had long to go, but I was actually further along than I thought. I recalled Virginia saying 'labour feels like a baby coming out of your bum', so when I got a funny feeling down there I decided I needed her here now! Funny how labour is - I answered the door to her saying casually ‘erm, I’m sure how far I am’, then seconds later I was doubled over the step. ‘How long’s she been like that?!’ Virginia remarked to Matt, she checked me and said, 'You’re fully dilated. Oh Natalie, your baby's ready to be born’. I couldn't believe it and was so glad I rang!
No time to get nervous, I just got onto my hands and knees on my bed (instinctively an upright position that I find hard to believe any labouring woman would not voluntarily choose!) and took a few blasts on gas and air, which was more like a comfort to hold onto, as it built I moaned out louder into almost a yell that absorbed all the fear, or one long ‘tenor note' as Matthew later called it, mouth wide open, that felt in my words ‘nice’ at the time but admittedly on video scares me. An intimidating power, not painful, more like an uncomfortable pressure, channelling that alien feeling into a overwhelming release downwards, certainly I would not choose to have been numbed from it. ‘When do I push?’ I asked Virginia, who said 'just do what your body tells you'. Why did I even bother to ask? Like a giant bowel movement my baby completely descended, out in one go with barely a sting. Virginia’s description of the elastic, concertina walls of a woman’s parts was true after all. I was pretty impressed with my body! My initial fears were that grief and oxytocin could not mix, but a woman’s body in labour is a force of its own, whatever the scenario.
I turned round to see his scrunched little newborn face and I was just so relieved and amazed. Is he alive? He had already gone. Stillborn. Maybe he died just before he came out, maybe even when I called out to him. I held him, saying ‘he’s ok. It’s ok’. Words I comfort myself with for many months afterwards. His eyes were tight shut and I realised with momentary disappointment that they would never open. I turned to Virginia and said ‘I love you’. Matthew, overwhelmed and solemn, said 'We're going to call him Evan'. 4lb 1/2 ounce. His nose, ankles and wrists were squashed from having no fluid around him in the womb but otherwise he was my simply perfect baby. How could I have ever wanted him whisked away, cleaned and wrapped? No way, holding his bloody birthy beautiful body in my arms was the best part of all! Virginia’s partner midwife Kay arrived and she helped make hand and footprints, bathe and dress him.
The placenta soon followed and I was reclining onto my pillow with Evan in my arms, happy and satisfied with tea and toast. I didn't cry at all, I was just flabbergasted in a strange peace, without the euphoria of a normal birth but neither despair. Virginia commented on how well-endowed Evan was, and we had a chuckle... we cracked open a box of Thorntons chocolates that I'd bought for the birth (that Matthew had been trying to get into for the past month.) Matthew went to sleep on the couch as I wanted to talk with Virginia, so that night Virginia slept beside me with Evan in a basket between us.
Cold dawn came and Virginia took Evan away to the funeral parlour. Weak with satisfaction and relief, with sadness yet to properly kick in, I decided to relish the moment by sending announcement texts to a couple of friends whom I'd talked to in the last few anxious days of pregnancy... my son Evan was born last night 2am, at home, everything is fine, we are so relieved and happy! A couple days later, once I could stand up again properly, Matt and I went for a meal, on the street where only days previously I was wracked with last-minute tears of how the hell I could do this. Now I sat down for a big meal beaming, so proud of myself, of us, so amazed by how birth went, so flipping proud as if we’d won. We’d won the easiest way ‘out’... by going straight damn through.
We would visit the funeral parlour over the next few days. After we parked the car I would walk with a fast step of anticipation to see my son. Holding him close to my face would dry my tears; my lips against his cool soft flesh, fragrant with the lavender from the little pillows I'd bought weeks ago in distressed tears at a farmer’s market, a perfect idea to support his head. I also spent time by myself, unwrapping Evan from his jumpsuit to kiss his chest, examine him and take lots of pictures, cry, talk and sing to him. I had him brought to our house for a last goodbye night before the funeral.
I knew from reading other women online, that I had to make the most of him. And now, I felt I didn’t want him front of me any longer. He was becoming more and more fragile, the plates of his skull were shifting and I was ready to say goodbye to his bodily shell, Evan was no longer in it. Surrounded by gifts we wrapped him up cosily in his little white coffin.
We’d decided the funeral would just be us and Virginia, along with the life celebrant and pallbearers. When I first arrived at the hole in the ground I bitterly cried my eyes out. Clear of tears I then read out some of my favourite quotes including my favourite one about how 'being fearlessly present in the moments of your Child's life and death, is the biggest gift you can give yourself and your child', Matthew read a short sweet poem he'd written, we played a song and each threw in a pink rose. Then it was over and it was home for Asda canapes. I wanted the gravedigger, waiting nearby, to close up the hole quick - a motherly instinct as if to keep Evan protected from the rain that was about to start. I felt a curious satisfaction that he was snug and wrapped up in blankets, as if sending away a time capsule far from my eyes to ever see again, for like the first words I said upon meeting him, ‘he is ok’.
A week later was Christmas, Matthew and I went off on a package holiday to Egypt to escape it. Christmas was cancelled. Lots of snuggling, sobbing and snorkelling in a lagoon, hotel flannels mopping up my milk. It was kind of depressing being surrounded by Russians with babies and toddlers. Looking back I wished we’d picked an adult only resort! Otherwise, it was a well needed time to get away from it all, finally free and able to travel again after our 3 months keeping local, waiting for Evan.
One of the amazing things about the times we live in, is the power of connection with other people through the internet. I’d learnt from others what to expect afterwards, about allowing time to grieve and that a whole new stage sets in after the birth and burial... it’s like two losses. Loss of the pregnancy and dream, then loss of the actual child. Revisiting every aspect of the loss with a new sense of actuality. I was also full of a love for Evan that I wanted to shout from the rooftops. A euphoric devastation.
Whilst Matthew distracted himself pragmatically by planning the next year’s calendar, I dwelled and reflected. He dealt with his feelings inwardly and sometimes I felt worried he wasn’t expressing them as much as I did, but I also appreciate men and women are different. Anger set in, and I found it very hard seeing other babies whilst out shopping. Topics like postpartum depression made me livid, how could a woman be depressed with a live healthy baby, would she rather be howling with empty arms? At the worst moments I felt better just accepting that part of me died when Evan died.
A tendency to reflection, self-pity and melancholy is a familial trait of mine and I thought this event could either be a death knell to my happiness in life, or a huge catalyst to sit up and say no, I won’t let it. Being with someone like Matthew I think has saved me in this regard. It’s impossible to be down around him for too long about anything, and his determination for level-headed optimism helped me stand up and just get on with life. Losing a child brings deep, raw guttural noises from the bottom of the heart. Yet in any crying session there’s a point where the fuel of grief ends and the tears become powered by a kind of masochism, as if beating more tears out of yourself, and that’s where you need to stop - and in the words I’ve given to many mothers of loss online in months to follow: ‘be kind to yourself’.
We both clung fast onto pride of the route we chose. We contemplated with intrigue that if I had a scan at 20 weeks, we would have found out sooner and it would have been a whole different story, most likely of termination rather than determination. We couldn’t help but feel happy we'd lived blissfully oblivious for so long, that we’d lived out Evan’s full life. One of the biggest reasons I’m glad I did not choose to end my baby's life, is that I would never have known if he’d been born alive. I would have given up that opportunity to ever meet him.
From hearing other women’s stories of carefully choosing to terminate, I also truly feel that there is no right or wrong. The importance is choosing what is right for you, but giving yourself time to work out what that is. Also, in life’s way of yin and yang, being open to feeling pain opens you to feel all its pleasures. What ultimately helped me through was opening myself up to feel it all. And strangely, I had a happier birth than many women have in normal situations.
Evan showed me what I call 'That Feeling': that incredible swelling feeling of knowing that you will do something no matter what and even death doesn't scare you! In fearlessly giving birth to Evan I felt like the impossible became possible. I've also learnt how important it is on many matters to let the heart lead, for women to lead, that peace and love are the real warriors of the world.
As an artist, I reminded myself to see all of life as an opportunity for creating - from not just the good but the pain. Whatever happens, keep expressing... in the words of Neil Gaimon, ‘whatever happens, make good art’... in the words of a loss book, I made what I’d call ‘exquisite affirmation’... the delicious words I chose for his gravestone, the painting I had commissioned of him, and many mementoes such as his cord scissors I kept and would be using to cut open packages of cloth nappies for his sister a year later.
I was also happy to be just me again, free again, sleeping on my stomach, no longer having to worry about Evan. I could concentrate on healing and preparing my body for getting pregnant again which hugely excited me, visualising giving birth again, to a live baby, wow... now it seemed even more amazing.
I was still deeply wounded, and phobic of the sight of other mothers with children. After all of the spiritual comforts I soaked up before Evan’s birth, now he was gone just as silently as he came, I yearned for some sign from him, there seemed to be nothing, I was left alone in this cold, wintery physical world trying to prise comfort from books about soul life, but ultimately with nothing to prove anything other than reassuring ourselves we had been ‘perfect parents to Evan’, that he’d achieved his purpose to experience whatever he came for, and gone to wherever he’s meant for next.
My body gave me no choice but to wait to try again, as I didn’t get a period for 4 months. Then, charting again, I was frustrated to see late and erratic ovulations.
My sister in law, who was pregnant roughly at the same time as I was, had a little boy just a few weeks after Evan. So I was faced with Evan’s cousin, Hunter, who would always represent how Evan would have looked. When I first held warm, squirming Hunter in my arms I handed him back quick and cried my eyes out. The involuntary bitterness took me many visits to feel comfortable around Hunter, but I had to put aside my sensitivity for lots of family visits because Matthew’s mum was terminally ill, and sadly passed away a few months later. We had said to her, Evan will be waiting for you, and she joked to us that she would ‘put a word in’ with ‘up there’ to help us have another child.
Then in July 2015, 7 months after Evan, and despite a suspiciously short luteal phase on my cycle chart, I got pregnant! And I began on a paradox of joy and fear - many fears - not just Potters, for which we’d chosen not to have any genetic testing, but the usual loss fears of any woman, amplified. Rather than consider ourselves ‘high risk’ as would the NHS, we chose to have only the scans required to check no recurrence, with a fetal specialist who we’d seen for Evan’s diagnosis. At the 12 week scan I was a nervous wreck, all signs good, but not until the 16 week scan was revealed in an amazing emotional moment - fluid and kidneys visible! This time we wanted to know the sex, so at 20 weeks we found out - we were having a girl. Evan’s sister was in the making.
My belly grew big and normal, full of fluid and healthy baby growth - particularly beyond the 28 week mark - that turning point of last time. It kind of blew out my prior spiritual thoughts to think of Evan’s soul returning, because as far as our limited human knowledge goes, this was a whole new child. Pregnancy soon began to solidify the death - and therefore the life - of Evan for whom a gravestone now stands, a child whom I lost, and will never regain in the physical form as Evan. There is something satisfying and calming about the masculine perspective of ‘it is what it is’. Evan died. That’s ok. He’s ok, it’s ok.
Whenever someone asked if this new belly bump is our first - I always, always mentioned Evan, and always talked of our story in a proud, beaming way - which now, was aided by the glow of anticipation of the arrival of a biologically ‘normal’ and healthy baby. Approaching full-term with a belly so big Matthew called it ridiculous - and even with my hips starting to buckle under the pressure - I strutted around in nude photos as proud as a peacock, feeling absolutely like the cat who got the cream.
And then came Lilith, in a perfect and ‘normal’, happy home birth I had visualised for so long. I was 2 days off 40 weeks when labour started with nervous shakes, actually whilst watching 50 Shades of Grey, the terrible acting made me feel worse. And you wouldn’t believe it, but that evening I’d made us a curry, and spilt too much curry powder into it (yes, accidentally!) and contractions started shortly after! The sensations continued into the following beautifully sunny spring day. I laboured in our garden with Matthew and Virginia close by, and as evening drew in I was leaning over our couch, clutching only an oil-scented pillow, and with that same, familiar loud long yell, a gurgling girl flew out, nearly twice the weight of Evan, but almost just as easily, and this time our camera recorded my face of utter stupendous awe.
I was amazed at how birth felt so instinctive and primal, both times. It brings you into the present moment - if you let it - and preferably stay on your own terrain. Time blurs, the hormones of your body are drugs of their own, carrying you through the ride, shifting the baby into position with every contraction, and then finally pushing them down and out in what is called the ‘fetal ejection reflex’, a natural phenomenon sadly seldom observed in hospitals, where the mother does not need to ‘push’ but rather to bear down and go with the urge, whilst her caregivers preferably stay back and stay quiet. I wondered if I could have been as bossy for lemonade, back massage and “shut up shut up shut up, I’m having a contraction” anywhere but my own home... a labouring mother is to be respected; the rockstar, everyone else but a backing singer, and I wish that was the societal consensus for all women. Birth is a shy lioness; let her pace the room and let her roar, do not figuratively tie her to a rock slab to be taunted with observation and worry, and then when she struggles or fails, call the lioness unreliable.
Our life as new parents came true, and the birth took away with it a lot of my fear. Our new lives as parents, although full of the usual baby gripes and challenges, was buoyant with confidence in our amazing new child, and we weren’t deterred to trust nature again with the choices for her health and wellbeing that we’ve made, from breastfeeding, to cosleeping from the night she was born, and following our gut and heart with instinct and traditional wisdom.
Lilith took away all the bitterness of our loss. All the prams I’d painfully turned my head away from, now I craned my head to see inside with an intrigue in the world of all the other flavours of babies. Even if I wanted to sit and dwell, life was too much of a distraction. We’d gaze at her sleeping rosebud lips and laugh at her little farts, treasuring the wonder of our creation just that bit more profoundly, having known what it’s like to have to say goodbye. This one was here to stay, and everywhere we went was like carrying around a ray of sunshine, a chunk of rainbow gold, her bright blue eyes and head of hair catching compliments like buckets of confetti.
Looking back, and forward
My story is full of many lessons to take away. It is not necessarily that nature won over modern science, for both served their purpose: Ultrasound was a gift to me in that it allowed me to know something about my baby I would never have understood otherwise, the cause of his fatal demise that was not something linked to my negligence, and allowed me to grieve in advance. Nature and modern science worked in a harmony.
I hope my story brings some comfort to anyone facing the same or a similar fatal or near-fatal prognosis - that even in the face of death, all is not worthless, all is not lost.
I hope I may even bring some comfort to the many women who will have experienced a first trimester miscarriage, because my story shows what happens when your body doesn’t recognise a problem with the baby and carries on.
I hope I even bring comfort to those grieving the passing of a parent, because for your parent to pass before you, ideally at a ripe age, is the way things should be, something all parents are glad for.
I hope my story helps anyone facing anything they think is impossible and that by taking it bit by bit, day by day, it’s doable. That we are capable of so much, especially when we have time, support and belief.
But in standing here today at IMUK, a conference in the name of independent midwifery, there is a point made by my story I want to draw your attention back to. It is about the importance of people standing up for themselves, and for each other, against faceless and unempathic bodies.
In my story, Virginia was the only character who stood alone from any party, and kept re-centring me as the decision-maker.
When someone neglects to tell you your choices, that is tantamount to not giving you a choice. It is manipulation.
I joined a group on Facebook for Potter’s Syndrome and every few months a new woman joins from somewhere in the world, whose baby will have been diagnosed with exactly what Evan had, and sometimes she terminates within a couple of days because in their
words, the ‘doctor thought it best’. Those women were never even given a choice, they probably didn’t think they had one. It would have been hard enough for me even with my own determination, but these women have no-one to play the role of angelic devil’s advocate. That is why I recommend independent midwives to all mothers-to-be.
Virginia is certainly not arrogant to think she knows everything, or that learning ever stops, but she puts the patient, *you* first, as an equal. Guiding them from the heart, not by protocols, by fears, or legalities - not like those ‘just following orders’, but having balls to step out even if standing alone.
Her attitude is nothing short of revolutionary, the future of all healthcare. I look for Virginias everywhere in everything, in particular in the area of wellbeing and medical choices: turning down dentists till I find one who respects the fact I simply ask questions, and seeking other forms of health providers beyond my GP, for this body we inhabit is a multi-faceted force!
Independence, standing alone from big interests, it a vital concept going forward in humanity and we’ve seen glimmers of it in the world in 2016. With people like Virginia in everything, it’s no exaggeration to say, it would be a different world. And I’d like to end this by thanking her, and all of you, for listening to our story.
By Natalie Dybisz
I want the story of Evan to go as far as possible to help other mothers, and other human beings in general in any tough situation, birth-related or not. You are welcome to reproduce this article on other blogs but first please email Natalie with a link to your blog in question. Many thanks.