We were back on telly again, Ruby and I, the Marilyn Monroes of fatal foetal abnormalities. It looked like we too were going to have a tragic end.
He scanned and scanned and scanned. I looked at his eyes, while he looked at my baby. His eyes gave me no indication of what he saw. He never did look up to meet my gaze; he concentrated only on the screen and on the content of my belly. He didn’t speak from the moment that he began to scan.
It felt like an hour as the freezing cold hand-scanner raced up and down and around the bulge in my stomach. He dug hard into my skin, but didn’t apologise or acknowledge his investigation.
He finally looked towards the lady with the green eyes and spoke to her over my bump. “I have seen what I need.”
The kind lady wiped the slimly gel from my belly and signalled for me to follow her. I did, like a lamb headed for the slaughterhouse. We returned to the room with the cream walls, with the four chairs and a garden window. I sat down and she went out, closing the door from the outside.
Ruby and I were alone once again. I walked to the window because I needed to do something, anything. I looked for the crisp packet and stared and stared at it.
There was no miracle, there was no happy ending to the series, and it was not the movies. My tiny angel was incompatible with life. This was the end. But, it would all be fine, in the end.
There was a knock on the door and Jane entered, ushering in the man with the rimless glasses and the white coat. They sat down, facing me.
It took him only seconds to confirm that the original prognosis was correct. It was Patau Syndrome with all the complications associated with that fatal foetal syndrome. He listed them all. The list was long and definitely longer than two days earlier in Dublin. Things, it seemed, were not getting any better. Instead the complications were growing. He said that the results of the amniocentesis had arrived first thing from Glasgow – they confirmed what he had seen on the screen – Patau Syndrome.
“When you are ready, we will proceed.”
His eyes didn’t meet mine; they looked above my head, as though he was looking at the back of my head, but from the front, like I myself had learned to do with people. Nor did he use my name or my little girl’s name – he didn’t even have the courtesy to ask what her name was – how bloody rude, I thought. I considered for a second introducing them but decided against it.
His job was the procedure and that was where it began and ended. We were the next procedure.
“Thank you.” I looked at Jane and then at the man with the rimless glasses and white coat. “If we can please have just a minute – so I can explain what is wrong to my little girl?” As I spoke my voice began to quiver.
Doctor Gimenez slowly got up and left the room. He didn’t utter a word, nor did he glance back. Instead he firmly closed the door, shutting out any emotions. Jane patted my hand and then followed him.
“You see, Ruby, what happened was that when we were making you we got it wrong. Making a person is like building a house with Lego. All the blocks have got to go into the right places. Chromosomes are like the Lego blocks – they are the blocks that make up a person. And if the Lego blocks aren’t in right place then the house will fall down. The same kind of thing happens with a person if the chromosomes aren’t right. Do you understand what I’m trying to tell you? Think of it this way: if you’re baking a cake and add too much flour and don’t put in enough eggs, then the cake won’t rise, it will stay flat. That is because you don’t have the correct ingredients, and it is the same with a person. All the ingredients need to be right for a person to be compatible with life.
“You see, what happened is that we made a mistake. Not just a small one; we made a big mistake, a fatal mistake. We gave you too many chromosomes, far too many. When someone is being created each cell in your body is meant to have two copies of chromosomes. But, when your dad and I were making you, we got it wrong, so very wrong, so in lots of the cells in your tiny body you have three copies of chromosome 13 instead of two. This means you have a disorder called trisomy 13 – it’s also called Patau Syndrome. That is what has made you so sick, what has made you incompatible with life.
“But we didn’t know – we had no idea that we had created an imperfect being. I am so sorry, Ruby. Your dad doesn’t know yet, he doesn’t know anything about the whole chromosome business. I think that we’ll keep it as just our secret, a girls’ secret. I think it would make him very sad if he knew about it. I would be afraid, Ruby, that he might never stop being sad ever, and if he got that sad maybe he would never be happy again and then it would be like having lost two people.” I stood by the window, gulping in Liverpudlian air, in an attempt to calm myself. “You see, I could lose him because he doesn’t have the tools to cope with sadness. For me, when you’re gone, I’ll suffer from a huge dollop of old-fashioned painful heartache, but eventually that heartbreak will fade. That doesn’t mean that I will ever forget you – it will simply mean that instead of thinking of you all the time, I will think of you only a few times a day. Luke is different – his sadness is much deeper, it eats at his mind and spreads to every cell in his body, like a disease. Because he doesn’t know how to mourn, it will make him dreadfully sad, and that sadness is like being alive but not present in the world.”
I sat down: my feet were tired from carrying my precious cargo.
“Patau Syndrome – it’s a funny-sounding name, isn’t it? – it’s called after the man that discovered it. He was from Germany. This condition makes you so unique that if you lived you would be only one in ten thousand who have this disorder. But the chances of your living are so tiny, that even if you were born alive, there is an ninety-per-cent chance you would die in the first year. You would die because your tiny little deformed body is incompatible with life. Fate has decided that you are not meant to be alive. Imagine, Ruby, being that rare, that unique. For every ten thousand people born there is only one like you. You are so rare that we should put you in a museum. If you were a painting we would hang you in a gallery, with a bronze nameplate explaining why you are so exclusive. It would tell people all about chromosome thirteen. It might even say that thirteen is considered an unlucky number by many people. Then people would pay to come and see you, like they used to pay to go and see freaks in a circus. You see, my little angel, with trisomy 13 your brain has not developed at all.”
Ruby began to move ever so slightly, as if acknowledging she had heard my explanation. Her movement felt like popcorn exploding under my skin, just below my belly button – just as Luke had said.
“The doctor already told me that your feet aren’t working either. Did I tell you this already? And they are pretty sure that there is a big hole at the bottom of your back, and you see it is not that easy to make your back better. Ruby, they can’t fix your body, it is just too sick. If there was just one or two things wrong then maybe but because all the cells have been made incorrectly, they can’t help us, Ruby. You are too sick to live. So you see we didn’t make you perfect like other babies, we made you imperfect. So, your body and its organs don’t work properly, and some of them don’t even exist. You are really screwed up. The consultant, he said that someone has to be that statistic. Do you know what they say, that tough times are sent to people to make them stronger? So, my sweetheart, you are the one. You were chosen to be the tough one and by God you are that, my Teflon angel, hanging on with all your might, your mighty heart defying nature and keeping you alive. They say what doesn’t kill you will make you stronger. So I suppose in this instance the cliché is a double header: it will kill you and make me stronger.
“Just now, in a minute – it is time for us to say goodbye, our last goodbye. You are not to worry about anything – I promise you won’t feel a thing. I know that you can’t feel a thing – they told me that you won’t know what is happening. Ruby, it would be so cruel for me to bring you into the world when you don’t have a brain – you could never do anything for yourself. You could never have your own thoughts. Y
ou would never have your very own wishes and dreams. There would be no colour in your world – your life would be like mine now, an old fuzzy black-and-white TV. You would have to live your life through us, and that would be so terribly selfish and cruel of us. You would never get drunk, fall in love, laugh with friends or swim in the sea. Life, Ruby, can be so very cruel, but I do not want it to be cruel to you, so you have to go somewhere else, my tiny little angel, you have to go to another place where it is not cruel, where people are kind. Do you see up there in the clouds, where you just float around, hang out and eat sweets all day and check out all the humans that you have to look after? That’s a much nicer life, what do you think?”
“Do you remember when we went on the whirlwind tour of my life, just yesterday morning in Dublin? Do you remember that we visited two people’s houses – Henry’s and Penny’s? One house was next door to the pub, with the black door, where Penny lived, the lady with the coloured dresses, do you remember? And then we went to the dusty pink house with the blue door and the flowers outside where Henry lived. Well, Ruby, when you go from here today, they will be waiting for you. Henry and Penny will be waiting for you. They will take you by your little hands to some place where you’ll be happy. They are good kind people; they will love and mind you. They, my little angel, will be your parents until I get there. You are to be a good girl and do what they say – be good until I get there. And remember what your grandmother used to say: mind your manners, and always say please and thank you. Because you are with them and not with us doesn’t mean your mummy and daddy don’t love you any less – it’s just that we cannot be with you just yet. Later we will, I promise – much later, we will come to you. We really love you, and that is why I am saying goodbye to you today, before your time. You see, today, Ruby, you will be born asleep, with your tiny little eyes closed – that is, of course, if we bothered to give you any eyes – I hope that we got that bit right, I hope that we gave you eyes, two of them . . . I wonder what colour your eyes are? I wonder would you be right or left-handed? I hope we gave you hands – I don’t want to see my baby without hands – please let us have given you hands, two hands with ten fingers. Is that too much to ask? I would like you to be okay on the outside – it’s okay if you’re totally screwed up on the inside because I can’t see that.”
Jane opened the door. “Whenever you’re ready, Afric.”
I rubbed my bump one last time. “Bye, my tiny baby . . . I love you, Ruby, and your dad does too – he just could not be here today, it would have made him too sad. We love you, my little angel, we will love you forever. Now go to them – they are waiting for you – he and she are waiting with their arms out to collect you – go now and don’t keep them waiting any longer. And be good for Mummy, be the best girl until I come to get you.”
Jane handed me two blue pills that would induce me. I swallowed them.
Ruby lay still inside my stomach.
Chapter 11
A Tuesday in June, 2013
Early Tuesday morning Ruby was delivered with the same care, dedication and dignity as all other babies – nothing different – except she was perfectly still when she came into the world.The lady with the kind face greeted her – she called her by her name – I was happy she did that.
They took her away and then she arrived into my room in a glass box with a lid and shiny chrome wheels under it.
She was pushed by a midwife with another kind round face. The person pushing the box wore a white outfit. On the right-hand side of her tunic, she wore a gold name-badge. It read ‘Lucy’ in dark brown lettering. Her badge was not lopsided like Jane’s.
They keep a famous mummy called Juanita in a glass box just like it in Peru. I have visited it. The girl in the box in Peru is over ten thousand years old. The girl in this box was minus three months old. Neither age seemed to make sense. I thought the box and its contents should be in that museum and not a foetal abnormalities unit in a hospital.
I thought it only polite to get up to greet my daughter – after all, that is what you normally do when you meet someone for the first time, isn’t it, and I hadn’t really seen her when she was delivered.
I moved myself to the edge of the bed and carefully placed my two feet firmly on the wooden floor. I stood up straight, very straight. I walked past the wardrobe on my left and arrived at the middle of the room. There I stood facing the door and the box. I had been alone in the room for a while. I was glad to have company.
The box approached nearer to me. I didn’t move, I didn’t take a single step. The prospect of meeting my own deformed flesh and blood utterly terrified me. I was frozen, like that mummy in Peru. I didn’t budge an inch from the middle of the maternity suite with the cream walls.
I hoped that my little angel didn’t think me rude, not rushing to greet her. I stared at the box, and stared and stared.
Her words called me back to reality. She called my name gently – no, not the girl in the box, the lady pushing the box, the lady in the white tunic.
“Afric, this is your daughter, your tiny little angel, Ruby.”
The lady with the round face parked the box like you might park a car, some feet away from me. There was me, the bed with tubes attached, the wardrobe and now the box; the room was far too big for so few things.
It was a kind of standoff. She was there, I was here and we had to meet in the middle. Except she was in the box and I wasn’t, so I had to do all the hard yards.
The box twinkled in the warm June sunshine; different colours of the rainbow danced on the top of the glass container. The colours were beautiful. At least she had got sunshine for her only day on earth. I thought it pretty decent of them to give us a good day for our meeting – well, seeing as how we had got everything else so wrong, that was the least that could be done – send us a couple of rays for our get-together. It was good to have something to talk about – after all, isn’t that what Irish people talk about mostly – the weather?
I stood there frozen, glaring at the container, watching the sun dance on my little girl. I was terrified of what I might see. What if I didn’t like what I saw? Would that mean that she would think that I didn’t love her? Would she know and then be awfully offended? I didn’t want to upset her on her only day on earth.
Obviously, I had not planned her day that well if she was going to spend it in a box. She could not spend all day in a box on her own – sure she would be bored stupid. I wondered if Lucy had put a toy in the box to keep her company. It must be so lonely all on her own with no one to talk to or nothing to play with. Nothing to do, just lie there and be dead. To be born asleep for your only day on earth would be pretty uninteresting for Ruby, I thought.
Maybe I should take her for a walk, a walk in the Liverpool sunshine. But where would I take her? Would we both end up lost because I didn’t know this city at all?
Maybe if the box’s wheels were sturdy enough I could take her to the garden? I could take her to the shrubbery just outside the window, the bushes with all the different green-coloured plants – I could show her the green of my school uniform. I could show her the crisp packet stuck in the bush. This room had cream walls too and a window, but it did not look out onto the shrubbery like the first room. I was not sure that I would be able to find the rockery with the crisp packet and what if we managed to find the shrubbery but the crisp packet had flown away, and then she might be very disappointed?
The lady stood still in the middle of the room, in a white uniform, with the box. She didn’t move. The box had not moved any closer to me, nor I to it. The sunlight still danced on its lid, as though the light was trying to tempt me towards it.
“I have washed and dressed Ruby, Afric,” said the lady. “I will leave her here with you, so that you can spend some time together. Just buzz me when you’re ready and I will come and collect her. You can have as much time as you like together.” Slowly she walked towards the cream door. She turned as she was halfway out the door and said: “I’ve taken some phot
os of her for you to take home with you.”
“You’re so kind. Thank you so much, Lucy.”
She smiled. “Call me if you need me.”
“I will. Thank you, Lucy.”
Now it was just me and her alone, with her in a box. How were we going to fill the time? It wasn’t like we could play a game, or I could throw a ball and she could chase it. You see, when Ruby was in my stomach it was on my terms and conditions – she had to stay there and I couldn’t see her – so, I guess in lots of ways it was not reality. Now was reality. A reality that I had not wished for.
I was terrified that she would look all mixed up, with all the bits in the wrong places. I stood in the middle of a large cream room with a glass box that contained my daughter. I stood there for a while, letting the shock register that there in the glass box was my little angel. She would never walk, run, swim or play with me – her tiny little confused body prevented that. This world was not the place for her body. Maybe her soul could be here but not her body.
I took a few steps towards the box and stopped a few more short of it. From a distance I peered into it, hoping to see from where I stood how bad things were inside the box.
The person in the box wore a blue outfit. A babygro with an elephant on it in a deeper blue colour and small white buttons running down the front. Her eyes were closed, so I didn’t know if they were dark chocolate-brown, hazel-green or they might even have been blue, steel-blue. I will never know. I didn’t think to ask the lady with the round face. I forgot to ask. How I could have been so stupid as to forget something as important as that? I wonder did the lady know? I wonder did we remember to give her eyes at all?
On a fluffy off-white blanket lay a tiny body wearing a blue babygro and a blue hat. Things seemed relatively normal at a first glance. She didn’t look like a deformed monster, which had been my biggest fear. What if she looked like a freak and I was terrified of her? What if her abnormalities scared me? Wouldn’t it be awful to be terrified of your own flesh and blood, to be terrified of something that you created? Scared of someone that we had fucked up so badly? Wouldn’t it be sad to judge your own daughter by what she looked like and even worse to be scared of her because of her imperfect features?
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