Cai came first, reluctantly thrust into the world three weeks before he was ready. My glorious, flame-haired, fiery-natured first-born son. He lay on my belly, still covered in the mucous of birth, his dark unfocussed eyes swivelling. Overwhelmed, I stared back, bemused by this tiny human scrap of life. Just a few ounces and a few days the right side of being premature, his body was so small, it fitted perfectly into his father’s cupped hands.
Two years later, Malachy joined us, five days overdue and so keen to make up for lost time, he was almost born at a toll booth on the motorway. He arrived with a frown on his face. We wondered at it, but didn’t understand. We soon learned. He lay in his incubator, a giant amongst his peers, a tangle of wires snaking from his body to a bank of computers and monitors. His first year was touch and go, but he made it. My beautiful second-born, Malachy the comedian, the musician, the stuntman, always with the glass of life half full.
And then came Carys.
Memories fire fitfully to life, then gutter, too painful to relive in full colour, yet precious nonetheless. I lock them securely in a dark corner of my mind, treasure to savour later, for the days after she is gone. Children like her never stay around for long.
I don’t want to forget how it feels to hold her, the brightness of her smile, the ripple of her laughter, the smell of her skin, the blue of her eyes, but I know I will. Time is cruel like that, and sly, stealing away the vibrancy of those beloved recollections whilst healing the pain of loss. Perhaps one is fair payment for the other.
It should have been a happy day, that first introduction to our new baby. Instead, we were told that she would die before she was born.
The mid-wife frowned, leaning closer to the scanner. I had expected a smile, indifference at least. Not a frown.
“I just have to get my colleague to take a look at this,” she said, patting my arm, and left the room.
The air seemed filled with the beating of my heart, faster and louder, as panic took hold and escalated. We waited a lifetime. Conor gripped my hand tightly, and I squeezed back, but neither of us said a word.
The colleague was older and probably more experienced. They both pored intently over the screen, faces carefully composed into identical neutral expressions. I stared too. What did they see that I couldn’t?
Then it was over. They were helping me up from the bed, wiping the gel from my swollen belly, inviting us to sit at the table by the window.
That’s when I knew something was seriously wrong. Only the couple who are about to receive bad news get to sit there. Everyone else is shown out as quickly as possible, to make way for the next set of parents. I looked at Conor, my question mirrored in his eyes. They can’t mean us, surely? This kind of thing only happens to other people.
A new, mechanical self took over as I switched off. Through the murk which enveloped my brain, I was aware of another voice added to the mix, a male voice with the authoritative tones of a doctor. His answers swapped places with Conor’s clipped questions. Strange words swirled through my consciousness … ‘foetal hydrops’… ‘cystic hygroma’… ‘fatal’… ‘termination’…
At some point, the conversation ended, and we were shown out.
Back into the corridor.
A bright and cheery corridor where only an hour earlier we had sat in the queue, eagerly anticipating our first contact with our new baby. A long line of happy, excited parents-to-be, all smiling at each other. Strangers waiting patiently, united by our common state.
Only an hour ago. How could so much change in so short a time?
We began walking back down that corridor. Past the line of happy parents-to-be. Into the lift. Down to the ground floor. Through reception. Out into the foyer. Across the car park. Out through the hospital gate. Along the main road to where the car was parked.
I didn’t see any of it. When we stepped into the corridor, grief seized me and became my whole being. I was aware only of Conor’s strong arm around my shoulders as he negotiated our route, and steered me in the direction we had to take.
We couldn’t go home. We had to make some attempt to get our heads around it first, so we went somewhere neutral.
The Mocha Bay café in Bettystown was bright and rather continental for rural Ireland, open to the big wide vista of stormy sea and sky along Ireland’s rugged eastern coast. We were immune to its charms. While the distant horizon poured its light and space upon us, we sat in its halo, holding hands across the table and gazing intently at each other. To the casual onlooker, this may have seemed no more than the intensity of new lovers, but really, we were gripping onto each other so hard for consolation, too afraid to make eye contact with strangers, in case we witnessed pity there.
The rich scent of coffee and the whirr of milk frothing wrapped us in its warm, soothing blanket.
“What will we do?” I whispered. Conor always knew how to make my problems go away.
“I don’t know,” he admitted. That threw me.
Our conversation went round in circles as we drank cappuccino and listened to the chocolaty voice of Ron Sexsmith filling in the pauses. The mournful lyrics, the soft tones of the music flooded me with emotion.
Still bumping around in my head were those foreign words; cystic hygroma, the doctor had explained, was a cyst containing lymphatic fluid usually found on the neck. It was often linked with foetal hydrops, which occurred when the heart had to pump a greater amount of blood around the body in order to supply the same amount of oxygen. This increased demand on the heart accumulates fluid in the skin, scalp, abdomen, membranes of the lungs and heart, leading ultimately to heart failure.
It had gone over my head at the time, yet even in my catatonic state, I could recount it word for word.
“The doctor mentioned… termination.” I could hardly get the word out.
Conor nodded, his face drained of colour but eyes suffused with emotion. I knew how he felt about abortion.
“I thought termination was against the law in Ireland.”
“It is. But these are exceptional circumstances. We’d probably have to travel to England to do it.”
I sipped my cappuccino. It had gone cold, but I didn’t care. I hardly tasted it, anyway.
“I don’t think I can do it,” I said.
“We could fly over,” offered Conor. “We don’t have to go by ferry.”
“I mean the abortion. I don’t think I can kill my baby, just because she’s not perfect.”
Conor sighed and sat back in his chair, removing his hand from mine, and pushing it through his tangle of thick dark hair. I stared at my hand resting empty on the table, feeling lonely without the warmth of his wrapped around it.
“No-one would criticise you for it,” he said. “It’s more than just having a baby which isn’t perfect. We’ll have that child for life. What kind of existence will she have, if she is severely disabled? What kind of life will we have? Not to mention how it will affect the boys.”
I knew he was right. There was no magical cure, no medicine, no surgical procedure which could help our baby. She was left to fend for herself. Live, or die. Or be murdered by parents too selfish and weak to give her a chance.
“I just assumed our cells would always produce perfect children. Actually, I didn’t even assume it; I just never even thought about it.”
“Well, we managed it twice before.”
“Exactly. So what’s different this time?”
“Nothing’s different. Same parents, same chromosomes.”
“But a cystic hygroma and foetal hydrops. Something must have caused it. And you heard the doctor. They are often symptomatic of something else, some kind of syndrome.” I shivered, wondering what our baby’s demon would be should she survive.
“Stop it, Ali!” Conor snapped suddenly. “You’ll drive us both mad trying to make sense of it. There is no logical reason. We just have to be practical, and decide what to do next.”
Being practical and objective were qualities which had never been high on my list of strengths. Besides, at this point I was too carried away by the wings of my self-pity to be anything other than melodramatic.
“There’s nothing we can do, is there? Except wait. Week twenty six, he said. That’s only eight more weeks of life left. Then she’ll die.”
“Might die,” Conor reminded me. “Doctors aren’t always right.”
I might have smiled, but my face seemed to have forgotten how. He always look on the bright side, no matter how weakly it shone.
He reached for my hand again. “Do you think you can go through the next two months, wondering every morning if today will be the day our baby dies?”
I couldn’t trust myself to speak. I just hung onto him for all I was worth.
“You do realise if the baby dies at week twenty six, you’ll have to be induced.”
I shut my eyes tight against the vision of going through hours of labour to deliver a dead child. A dead, deformed child.
“If she survives, we may have to spend the rest of our lives caring for a handicapped child. Most of it will be down to you, as I’ll be at work. You do understand that, don’t you?”
I stared at him, a rising tide of anger sweeping aside all other emotions. “You sound like you actually want me to get rid of her.”
He recoiled, as if my accusation had stabbed him through the heart. “Of course I don’t!” he protested. “But we do have to consider every eventuality.”
As I sat there fuming at the injustice of it all, my anger turned to blame. Perhaps all this was his fault. Maybe there was something hidden in his family’s genetics that nobody would acknowledge. Perhaps it was my fault. After all, I had eaten that prawn last week, and sneaked a gulp of red wine when I knew I shouldn’t.
I blamed God, Mother Nature, whatever larger entity had decided that this child was to be my fate. I even felt angry with the doctors, for whilst I couldn’t blame them, it was they who were responsible for discovering this nameless thing which possessed my child.
But furiously apportioning blame changed nothing. I still carried a faulty baby within me, and we still had to decide what to do about it.
My choice; let nature take its course and endure the consequences. A prison sentence as long as the rest of my life. Or Carys’s, whichever was the shorter.
Or abort, and live with an eternity of guilt, always wondering if the doctors had got it right or wrong.
Amniocentesis did not reveal her syndrome, but it did reveal we had a little girl. We named her Carys, from the Welsh word for ‘love’, and Morgan, which meant ‘sea-bright’. We needed to think of her, not as an embryo with a defective gene, but as a real person, our child, our special daughter.
And somehow, without even realising, our decision was made. We would let nature take its course.
Each morning was a treasured gift, as I awoke and realised that my baby was still alive within me. My body, wrapped around this child, was being granted another day of precious embrace. I desperately wanted her to be born alive so I could hold her, look into her eyes, and tell her how much we loved her. Just five minutes of life, that was all I dared ask for. If she passed away in our arms, at least we would have told her. She would know.
Yet whilst the experts urged us to accept the inevitable and discuss funerals, I could feel something else growing within me alongside this new, tragic little person.
It was hope.
I don’t know where it came from. Not from religion, for I had proof now that God did not exist. But I could feel it, and in my mind’s eye, I could see it; a shining thread of light, so strong, yet so delicate it could easily be broken by a breath, or a careless word. It wound its way through every fibre of my being, from the tips of my toes to the ends of my hair. And whilst I could not at this point put conscious expression to it, it was to prove a constant and comforting companion. As time went by and Carys stayed with us, my slender ray of light became a magnificent dancing cord of raw energy throwing bright lassoes around every straw I dared to clutch at.
And yet, I gradually felt myself fading away. I became a mechanical being, jerkily going through the motions, ricocheting aimlessly between the boundaries of emotion and reaction. Somewhere in-between, I tended my home, took care of my boys, and tried to be a wife to my husband. Behind the strong brick wall, I was crumbling.
Wherever I went, wherever I looked, there were other pregnant women. Happy smiling, pregnant women. And inevitably, they tried to draw me into their exclusive club.
“When are you due?”
“Do you know what you’re having?”
“Are you all prepared?”
Too soon. Yes. No.
No-one ever asked, “Will your baby be born alive?” Or “Will she be deformed?” Or “Will she be a retard?”
Happy, happy, happy. Everything about pregnancy and childbirth is so bloody full of joy.
But I put on a good act. Only my friends knew how much I was hurting as my mouth stretched into its glad arc and told its lies.
My friends gave me the space I needed, but discreetly hovered around me, like planets going around the sun. They were always there, unobtrusive but steady, like stepping stones to hold me up out of life’s mire, or posts to lean on when my burden grew too heavy.
We didn’t talk about it much; I was too raw, too devastated to articulate. But friendships don’t need words to bind them. They had eyes in their heads and hearts in their chests, these special women I hid behind. They looked at me, and they felt what I felt. What they didn’t know they guessed. So between them, they built their wall of love and protection around me.
Although we had expected it, had never been led to presume anything else, the day that Carys stopped moving inside me came as a shock. We rushed to the hospital, full of panic and a sense of doom.
The midwife allocated us a cubicle, and said the doctor would be with us shortly. Next door, the woman behind the curtains groaned and moaned her way through the first stages of labour, her efforts rewarded by her partner’s murmured encouragement.
The ward was busy. We sat looking at each other, unopened magazines on our laps. The minutes ticked into hours. No doctor came. The woman next door was wheeled off to the delivery suite. Hospital life revolved around us as if we were invisible, cocooned in some other dimension.
“I just want someone to listen for a heart-beat,” I said at last. “Is that too much to ask?”
Something in Conor’s face hardened. “I’ll be back in a minute,” he said, stalking off down the corridor. He reappeared some time later, sternly frog-marching a perturbed-looking midwife to my bedside.
She placed her foetal stethoscope on my belly, and listened carefully. I fixed my eyes firmly on Conor, too afraid to meet her gaze and acknowledge what I might see there.
“There is a heart-beat. Your baby is alive,” she said.
Relief and joy whirled instantly through me, culminating in an exultant outburst of mixed tears and laughter.
“That’s all I wanted to know,” I told her, when I could draw breath. “Why didn’t you just do that when we arrived?”
“I’m sorry,” she replied. “We’ve just been so short staffed-”
Conor cut her off abruptly. “We’re not interested, so save your breath.” He began gathering up our things.
The poor woman sighed. “You really need to wait and see the doctor.”
“We’re not staying here a moment longer. We’ll see our own doctor.”
“If you want to make an official complaint-”
“Believe it or not, we’ve actually got more important things to worry about,” replied Conor stiffly, helping me off the bed.
Sometimes it felt like me and Conor against the world. We wrapped our arms around each other as we walked to the car park. Actually, I believe we might have skipped a little!
Our tiny daughter was alive.
The dreaded Week Twenty Six came and went. And another week., followed by another. Well into the third trimester, our baby was still very much alive inside me and making her presence felt.
Conor and I dutifully attended our regular weekly scans, but something was different this time. I lay there quietly in the dark, Conor on a chair beside me. Dr O’Neil pushed the monitor relentlessly over and over my big round belly, staring at the screen intently. My breath caught in my throat. What was taking her so long?
Finally, she stopped and turned to stare at us, arms limp at her sides, her features softened with wonder.
“I don’t want to get your hopes up,” she said, “but today’s measurements seem to show that the foetal hydrops could be resolving.”
Of course, our hopes sky-rocketed immediately. Conor leaped off his chair and began punching the air to shouts of “Come on!”
I couldn’t help but smile. He only ever got this excited when Brian O’Driscoll ran the full length of the rugby pitch and scored a perfect try.
For hydrops to resolve of its own accord in the third trimester was unheard of. Week by week, measurements rewarded us with a consistently fading hydrops and shrinking hygroma. As they withered, so our joy blossomed.
Against all the odds, our feisty little daughter had fought her lonely battle for life and won.
Carys was delivered three weeks earlier than expected, on a bitter, grey December afternoon in Dublin. It had taken me nine hours to push her out into the world, but I had endured, and she had survived.
Now she fretted, her voice lusty, as a team of doctors and nurses looked her over. Finally, I was allowed to hold her for a few moments.
“Her skin’s a little puffy,” I commented, consumed with worry.
“It’s just residue from the foetal hydrops,” replied the mid-wife brightly. “She’s very healthy.”
I was holding our special daughter in my arms for the first time, who knew for how long? She was real, alive, and perfect. Well, almost.
“What’s this bulge of skin at the nape of her neck?”
“That’s what’s left of the cystic hygroma. As she grows and fills out, her skin will stretch and that roll will disappear.”
I stared at my baby. She slept peacefully in the halo of my arms, unaware of the danger crouched deep inside where my protection couldn’t reach.
There was something otherworldly about her smooth, golden skin and thick, black curls. When she opened her eyes, wonder tingled down my spine, for they weren’t navy in color, like other newborn babies; they were the palest silvery blue, a shade I have only ever seen in the Skerries sea on a calm winter’s morning. The same sea beside our home, where we had planned to scatter her ashes.
The mid-wife took her from me gently. I wanted to shove her arms away. “Time for Daddy’s cuddle,” she whispered, handing her over.
Conor looked tenderly into that little face, emotions working beneath his skin, shaping his expression into something I knew he would rather hide.
Then she was snatched away from us and rushed to the special care baby unit.
The next day, I was discharged from hospital, but Carys was not.
On Christmas Eve, a tangle of blood vessels began to bloom on her forehead.
Santa had been and gone, leaving a soft toy, a card, and a photo in every cot. The cots were rowed up, neat lines of little glass boxes containing tiny, wrinkled, doll-like babies pierced with multiple wires and tubes. These were their new mechanical umbilicals, the cots their glass wombs, the banks of computers and machines keeping them alive like their real mothers couldn’t.
Carys had just a green nasal feeding tube taped to her cheek. She wore hospital clothes, pink and faded, clearly well-worn. I hoped fervently these other little girls had survived their ordeal and lived happily ever after.
The geneticist turned Carys over carefully, minutely examining every inch of her tender little body. She was too deeply asleep to mind. Since the birth, she had not opened her eyes once.
“She could have Noonan’s Syndrome,” he told us at last, peering at us from behind thick glasses. His eyes flickered keenly between us, trying to gauge our reaction. The expressions on our faces showed that we didn’t believe him, didn’t understand him, wouldn’t accept it, couldn’t. Frowning through his sandy beard, he began pointing out the evidence.
“See this bony ridge on the back of her head? The position of her ears? They’re too low down and slightly rotated. She has no bridge to her nose. Her eyes are too far apart. She has no eyebrows, and sparse eye lashes. Her eye lids droop down slightly. Her forehead is slightly depressed on either side. Her nipples are further apart than normal…” He continued down the long list of features which backed him up.
“Cystic hygromas are often associated with Noonan’s,” he finished, triumphant. It was his parting shot, the final nail in the coffin.
I looked at Carys, and I saw all those things. But superimposing these flaws, these genetic errors, this quirk of human reproduction, I also saw a sweet little newborn with a mass of black curls and golden skin. She was the cutest baby in the unit. How could anything possibly be wrong with her?
“Noonan’s Syndrome?” I said to Conor doubtfully, when he’d gone. “I’ve never heard of it.” I turned over the leaflet we’d been given. One small sheet of paper. The sum of our knowledge. “He’s a professor. He must know what he’s talking about.”
Conor’s resistance overshadowed mine. “At the end of the day, he’s just human. Humans make mistakes, and doctors aren’t always right.”
We watched Carys’s gentle breathing as she slept, oblivious to the hum and beep of machinery which formed the soundtrack to our lives.
The medical mystery continued unsolved. Various detectives came to us in the guise of doctors, but the diagnoses they offered bounced back and forth like ping pong.
Meanwhile, the birthmark on Carys’s forehead continued to grow with a speed and malicious enthusiasm which astounded me. Day by day it expanded, turning a deep, shiny red colour, a sinister parasite claiming its place on my daughter’s face. The surface began to wrinkle and pucker, forming little hills and valleys, a menacing roseate island rising from the soft smooth sea of her skin.
And then the bomb was dropped. Tests revealed that Carys had Cardiofaciocutaneous Syndrome, a syndrome so rare, we didn’t even get a leaflet. We went home and did the thing which doctors hate most; we trawled the internet, or at least I did, and I found CFC International.
Cardiofaciocutaneous Syndrome. Quite a mouthful, but anything less just wouldn’t do it justice. A long list of medical conditions and physical features accompanied the syndrome. I couldn’t take it all in. All I wanted to do was read other families’ stories, and absorb the photos of their CFC children.
“Come and see this,” I urged Conor.
He looked over from the sofa, where he was reading yesterday’s newspaper. It was late, the boys fast asleep in bed.
“What is it?” A note of reluctance tainted his words.
“These children all have CFC. Do you think Carys looks like them?”
“She’s just a baby. It’s impossible to tell. I’ll look later.”
“Conor, this could be what she has. Aren’t you interested?”
The newspaper went up in front of his face. “What she might have. Why are you so impatient to label her? There might be nothing wrong with her at all,” he replied from behind his flimsy fortress.
I realised then that Conor had chosen not to remove his rose tinted spectacles rather than face up to the truth, and that made me feel so alone.
The birth of a child with a rare syndrome like Carys is truly a lesson in human nature, your own as much as anyone else’s. It’s like taking a trip into the dark side of your soul. It’s not somewhere you want to get lost.
On my journey, I discovered many ugly emotions lurking beneath my skin on a scale I never thought myself capable of; anger, despair, jealousy, shame, sorrow, confusion, self-pity and depression, to name but a few. And worst of all?
For the strangers, who treated us like freaks. For the professionals, who treated us like an exhibit. For the friends who treated us like we’re made of china, whilst trying to hide their normal, perfect lives and normal, perfect children. For family, who weren’t there when they were needed.
But all that is understandable, forgivable. What’s not, is the hate directed at my child, that sweet, smiling, innocent cause of it all.
Confessing is so very hard to do. I don’t want to hear myself say it, because that makes it real. It makes me a monster, not a mother. Not even remotely human.
But it’s true. And here’s why; all I can see is a lifetime of changing nappies, mashing food, coping with tantrums, singing nursery rhymes to an adult child who keeps patting her head for yet another performance of ‘head shoulders knees and toes’, caring for a baby who never grows up in the true sense of the word, despite getting bigger.
And I wonder, will I ever climb a mountain again, hitch-hike across South America, stay out late drinking wine with friends, and not worry that I have to stay sober in case Carys goes into heart failure during the night and I have to get her to hospital? Will I ever feel weightless and carefree again?
And then I feel guilty for being so selfish. The hate creeps back in, suffocates me with self-loathing, and that mocking, disdainful inner voice tells me I don’t deserve a child like Carys. In my blindness, I don’t even know which way to read that statement.
That dark side of me is relentless. It haunts me, never leaves me. It has become my cruel, faithful shadow, waiting eagerly to enfold and absorb me when times are tough. It reveals to me what true ugliness is, and it terrifies me that such a parasite can lie coiled up so tightly within me. Sometimes I get lost, and then it senses my vulnerability, it pounces and makes me do things I never normally would do.
So it was that one night, I almost deliberately ended it all. It was dark, I was driving, and the headlights of an oncoming truck were dazzling, mesmerising. It occurred to me how easy it would be just to swerve across the road into its path, just a tiny twitch of the steering wheel was all it would take, and then the deed would be done. Peace. No hatred, no grief, just nothing.
I didn’t do it, because in the dark, I’m a coward. But even over-riding my cowardice, my love for my children and my husband was stronger. I couldn’t do it to them, couldn’t leave them. The truth is, I love them far more than I love myself. And that’s how it should be; it’s the shining beacon which always leads me safely home, abandoning my trusty dark side and ugliness at the front door.
Shortly before Carys had surgery to remove the haemangioma, the birthmark which had bloomed on her forehead in the days following her birth, I took her shopping at our local mall. I was used to people gawping in her buggy as if it contained something they’d scrape off their shoe. Being used to it didn’t make it any easier to bear, but my choice was either to tolerate or hibernate.
I hadn’t expected to be hounded around the shopping centre by a group of children old enough to know better, who laughingly pointed out my baby’s deformity, just in case anyone happened to miss it, exclaiming loudly amid mock puking, just how ugly and disgusting Carys was.
Instantly, hatred and anger flared and went to war inside me, using my soul as their battlefield.
Their behaviour taught me something; they showed me what real ugliness is. I realised that it has nothing to do with facial disfigurement. In fact, it has nothing to do with physical appearance at all. Like it’s polar opposite, beauty, it’s something which can only be truly found on the inside of a person.