Margaret was a joy for her two short days
People ask what she was like. All parents are ridiculously partisan and perhaps we were too. But truly ...
Last December in ‘Weekend Review’, Gemma O’Doherty reported the moving story of Hilary Ní Lorcháin. The 33-year-old Dublin historian and her husband John were looking forward to the birth of their first child when they discovered their baby had Edwards syndrome and would not survive more than a few days. Margaret was born just before Christmas. Today Hilary shares the precious short hours they spent together.
There was no sound, no cry – just a whimper as the midwife put her into my arms. Our Margaret. We had waited a long time for her. Serious and wide-eyed, she was looking straight up at me. It must be hard just being born, confusing to be out in the world, I thought.
"Minutes to hours," the doctor murmured gently.
What a thing to hear as you gaze at your first-born, who is quaking and wide awake and you are just noticing that she has dark-grey eyes and perfectly lovely fingers and toes.
But the doctor was proved wrong, for Margaret was stronger than she seemed. She lived for two-and-a-half days, all 4lb 10oz of her. Small but spirited, we like to think.
Every birth is different, I know. You can't compare experiences. We had no nursery prepared, no books on parenting, no kit at all to herald the arrival of our eldest daughter. There was none of the brightly coloured paraphernalia that first-time parents are prone to buy in bulk and perhaps regret after.
We just didn't want things lying around the house afterwards – the empty cradle, the unused toys, the manuals telling you how to bond with your baby. That would be worse than anything. Yet we made our own preparations, painful in their way, but out of that same instinct that other parents have to protect and care for what is one's own.
We borrowed a car seat just in case Margaret was strong enough to come home. Someone else had promised us the loan of a cot, if needed.
With her still dancing and kicking inside, we made a desperately sad journey to the infant graveyard to make sure that it would be a fitting resting place for her when the inevitable came.
I saw the list of names and the dates. Would she make it into the 2013 list, I wondered, or would she be the last to die in 2012?
Three days before she was born, I went to the supermarket's infant aisle to get a baby wash and a lotion. My eyes skipped over every brightly coloured variety imaginable and landed on the travel-size bottles. I got one of each. I suspected that it was all Margaret would need.
We left for the hospital with a sort of dread of what might happen, fearing that she mightn't make it to birth after all, that we'd never see the colour of her eyes.
But she did make it. She made it against huge odds.
People ask what she was like. All parents are ridiculously partisan and perhaps we were too. But truly, Margaret was a joy for her two short days.
People talk about special needs and no doubt, had Margaret lived, her needs would have been special.
But for our two days together, her needs were essentially the same as any baby's: she needed to be fed and changed and kept warm because newborns get cold so fast. She needed the feel of soft materials on her skin. She needed to be sung to.
Most of all, she needed human touch: she was never happier than in somebody's arms. It visibly pacified her. She regarded everyone as a kind of human hammock and, eschewing the possessiveness of some parents, we made sure that every visitor got a chance to hold her. Why not share her around? She wouldn't have long to receive love.
Obviously, we had looked forward to welcoming Margaret and knew that any time with her would be precious, but in the end, the very best thing was the most unexpected.
At a time of the greatest anguish and emotional strain, when every instinct was in chaos and every feeling was in mutiny, Margaret made us not just smile but actually laugh.
I had imagined that she would be desperately ill and helplessly needy but never that she would have the most amusing expressions. Sometimes she looked at least 1,000 years old and wise and sometimes she looked utterly newborn and pleasantly vacant.
She had a cross face, too, which we diagnosed as evidence of impotent rage.
Of course, I put her in the beautiful woollen dress that I had got for her. She looked a treat but I am not sure whether she would have been a dress-up girl: she made quite a grimace.
When swaddled in a blanket and in a hat, she looked rather like a Greek Orthodox patriarch. Very architectural, with her very small face peaking out on top. Naturally, it became her signature look.
People ask if she suffered. Good palliative care minimises or eliminates physical suffering and we had plans for medication in place, should she need them.
But she didn't suffer, although I must admit that she had quite a squeal when she was hungry. She suffered, you might say, less than other newborns. There were no injections, no blood-pressure cuff, no medical interventions, no separation in a nursery, no time spent in an intensive-care unit – just marvellous comfort care for all three of us and time spent together.
Had she being going to live, we would have been irresponsible not to let her go through whatever minor sufferings were necessary so that she could grow into a healthy baby. But we knew we didn't have to bother Margaret with any of that. So she stayed with us all the time, our very small girl, and we made much of every fragile moment.
We can neither acknowledge nor praise adequately the enormous support received from family, friends and the medical and hospice staff.
The nurses bought some preemie-size outfits for her and had fun dressing her in them. People popped in with care baskets. A friend gave me a necklace with her birthstone on it. The palliative-care doctors felt her heartbeat and talked to us about how to care for her.
The umbrella organisation, Now I Lay Me Down To Sleep, co-ordinates photographers who volunteer to take sensitive pictures of families in such circumstances as ours. We were helped by two perinatal hospices, Alexandra's House and Carousel.
As it was our first wedding anniversary the day after Margaret was born, our friend from Alexandra's House brought us in a bottle of champagne. I hadn't ever imagined in my wildest thoughts that we would be here.
In sickness and in health. That was the deal. We had said it so blithely.
It felt like a triumph to leave the hospital on the second day and go to hospice house. A triumph? The irony was biting but we were then beyond irony. We were just living it.
Margaret was in a car-bed – she was too little and weak for the car seat that we had borrowed. That's always the way with preparations. You never get it quite right. The snow was on the ground, I recall, and it felt good to show her the world.
I know that some people think hospices are about giving up on life. A place of defeat. But in reality, they are about living life to its natural end with courage and dignity in a community where the value of peaceful endings is recognised. But what's that like for parents of a newborn? How do you deal with that? There was no map, no manual that could help us, but something wonderful happened while we were there, something that we shall cherish always. I don't think it could have happened anywhere else.
Through all the various emotions of the previous nine months, I hadn't expected that I'd feel proud. I hadn't expected that strangers would say nice things about Margaret. Some people might even have thought her life not worth the wait because she was going to die anyway. They might have pitied us.
But in the hospice, as we carried Margaret down the corridor, a man came over and gazed down at our little bundle. "She's so beautiful," he said wonderingly, adding: "She's perfect." Not "I'm so sorry she's dying."
He didn't seem like the kind of man who would have gone out of his way in normal circumstances to coo over a newborn. But here was different. We were all here for a reason.
A woman walking behind him looked straight at me and said: "She's a gift – a real gift." The words had weight. The weight almost overwhelmed me. I nodded through a sudden blinding rain of tears. And so we continued our slow walk through the corridor to our room – bowed down but grateful.
All mothers sooner or later feel pride and I did then. For the first time and the last time.
There would be no other moment like that – no pride in scholarly or sporting achievement, no pride in her girlhood or her coming-of-age, no frivolities of planning a wedding, none of those deep heart-to-hearts shared between parent and child.
This was it. You take what is on offer. You don't reject a gift, even if it's not the gift you expected.
It was the most beautiful experience that I would never wish upon anyone else. Strangers had gone out of their way to tell our dying daughter that she was beautiful. What more was there to say? She was beautiful.
Was it worth it? Of course, we say, she's our baby daughter
She died later that evening, peacefully, in our arms, having never known anything but love.
It was December 20, nearly the shortest day. She would never make it to Christmas after all.
A woman who didn't know had said to me a few weeks before her birth: "Ah! So you are going to have a Christmas baby! How incredibly special. You'll get to hold her in your arms for Christmas – there's nothing quite like that."
I didn't explain then. I didn't think I could. And anyway, she was right in a way she could never have imagined.
We didn't get to hold Margaret at Christmas but our Christmas visit was to her grave. There was nothing quite like that. There she is, buried beside baby triplet girls who died in 2010. One never grieves alone.
People have been so kind even when they don't know what to say. We've cried together. Some friends had babies around the same time as Margaret. I meet up with them – friendship runs very deep at a time like this. They show me their baby. I show them my photos.
They come with all the unwieldy tackle of parenthood – the pram, the wipes, the change of clothes.
The photos fit in my rucksack. I don't want them to get dog-eared in the rain.
I ask them how things are, about the joys and the exhaustion and I get to hear about the first smile and the assertion of early personality. And then they ask me, gently, what Margaret was like.
I don't talk about her illness any more. Somehow, it's not so important after meeting her. I say that she was lovely and had dark-grey eyes and that she gripped on to our hands, that she had quite a squeal when she was hungry and that then she stopped being hungry.
If anyone asked us whether it was worth it, John and I would simply say: "Yes, of course: she was our daughter." I'm not conscious of having done anything more than other parents would have in similar circumstances.
Some parents feel a sense of the presence of their child in such cases. I do not. I've never dreamt about her, although I think about her a lot.
There's no consolation except the rational consolation of having no regrets, of feeling no guilt or angst, of knowing that we made the most of our time with our daughter and that we did everything we could for her until there was no more to be done.
That's enough for us to get along for now. Hope dances in the puddles. But actually, if I'm honest, maybe it's not enough. You can't live completely in your head. That's why what happened four weeks after she was born – call it a coincidence – meant a lot. And it made me realise that I'd changed, that I'd always think differently now.
I wanted to mark the month's anniversary of Margaret's birth in a special way, so I went to the florist's and, glancing at the display behind glass, I immediately spied some bouquets of spray roses.
There was a very tiny bud on one, hardly opened, blush pink. It reminded me of Margaret. She had been so fresh. And her skin had had that nice pink glow. She had smelt so good. That would be just the thing to mark her birthday.
I pointed it out and the shop assistant went to get it. "Oh" she said, "one of them is broken. I'll get you another one." Previously I might have thanked her. Now I found myself saying: "I'm okay with broken."
"Would you like a discount then?" I shook my head. No. It was worth the full price. And I said, unnecessarily: "You see, it's just as lovely that way." She was too well-bred to look puzzled.
I watched her wrapping the flowers carefully in tissue paper, deft fingers on the cellophane. Then she handed them to me. Even before I took the flowers, I knew which one would be frayed at the parent stem.
Sometimes it hurts to find things broken beyond repair. Sometimes it hurts to realise just what we can't do. We are so used to fixing things, solving problems, making outcomes better.
There's always another one in the back of the shop or we can order it in. There's a pill, a friend of a friend, a website, an expert out there, a healer, a technology, a magic wand. . .
And then sometimes, there's not. There's just not. We have to recognise our limitations. We can't give babies like Margaret an education or a cure. But we can give them something much better than either of them. A big welcome. And a little loving.
Edwards syndrome, also known as Trisomy 18, is a rare genetic disorder found in children born with three copies of chromosome 18, rather than the usual two. It is associated with structural defects of the heart, kidneys, brain and intestine and has a very low survival rate.