Lifestyle

Saturday 30 August 2014

I bought a dress for my unborn Christmas baby – even though I know she'll die

Hilary Ni Lorchain is having a Christmas baby. In about a fortnight's time, the young historian from Dublin will deliver her first-born child. She'll call her Margaret, after a much-loved grandmother.

Judging by the most recent scans, Margaret has a pixie face and curly hair. She's busy in the womb, kicking her legs and touching her toes.

On a recent trip to London, Hilary (33) stopped off at Harrods to buy her baby a dress. She picked a cream woollen one with a ribbon at the front and four buttons on the back, exquisitely made and shockingly expensive. But even though it was the smallest dress in the shop, Margaret will never grow into it.

In about a month, as families gather to celebrate Christmas Day, Hilary and her husband John will prepare to bury their new baby in her dress.

Although she looks perfect to her fingers and toes on the 3D scans, Margaret's tiny body is riddled with illness. She has two heart defects, and is suffering from Edwards Syndrome, a rare genetic disorder which occurs when a child is born with three copies of chromosome 18, rather than the usual two. Her life expectancy is limited to just weeks or days.

It was during her 12-week scan, when doctors started talking in whispers, that Hilary knew her pregnancy would not be a 'normal' one.

"The statistics of something like this happening are around one in 4,000," she says. "But as the opinions of cardiologists, gynaecologists and genetic councillors all converged, the odds were rapidly whittled down until it became a certainty: a one-in-one chance that she would be born with a fatal foetal abnormality.

"Before I knew, I had bought a book entitled The Lazy Girl's Guide to a Blissful Pregnancy. It was about my level – a happily minimalist approach to the whole affair. Now, the title seemed to mock me. I knew I was heading on a very different journey."

At the time of the diagnosis, she was living in London and receiving pre-natal care through the National Health Service. It wasn't long before she realised her plans for the pregnancy differed sharply to what her clinicians presumed she would do.

"Abortion was raised almost immediately," she says. "I'd lived in Britain for years and understood the culture there, but I still found it deeply distressing. Abortion hadn't even entered my head, and it never has once throughout my pregnancy.

"At the hospital, they gave me a handbook, which women in my position are given by default, but it spoke only of termination. It said that you might want to 'hold the baby' after the termination to see that 'the baby, while not perfectly formed, is not a monster'. I recoiled when I read that.. at the thought that any child, healthy or sick, could be considered a monster.

"The staff were extremely well-meaning and caring, but they were puzzled. They said: 'You may want to do something about it, now that you know. You could consider saying goodbye early.' I told them I was rubbish at saying goodbye at the best of times.

"For me, rejecting a termination has always been based on reason – the logical proposition that, just because we cannot see it with our own eyes, life in the womb is real life – not potential life. Whether that life is marked out by illness or fatal anomaly isn't the point.

"My husband John takes a more scientific approach. He feels that Margaret is a genetically unique human being at an early developmental stage rather than a mere 'ball of cells'. We decided to accept the whole journey and try to live it well, rather than be angry and resentful."

Hilary now lives in Kansas, where John is studying medicine. They decided to have Margaret in America because it has dedicated perinatal hospices which look after babies born with fatal abnormalities, and parents who want to see their pregnancies through to their natural end.

Ireland has no such facilities, although the only children's hospice, LauraLynn House, can provide palliative care for newborns.

"The logo of our hospice is of a child's hand with six digits," says Hilary. "It is the handprint of the founder's niece, who lived a mere 45 days after succumbing to a fatal genetic disorder. Her six fingers don't appear monstrous: it's just a plea to recognise diversity.

"The hospice is a remarkably humane place because they genuinely consider it a privilege to be part of your journey, not a duty or a burdensome responsibility. It's a community-based volunteer foundation where doctors give their services for free.

"A local sonographer offers free 3D ultrasound sessions to families which are so much better than the grainy 2D shots that are routine for pregnant women, and a photographer runs a special package for those wishing to capture the few short hours or days of a baby's life.

"There is a knitting group which makes 'love blankets' for each child, and we even have a group of elderly ladies from a local retirement home who make little woollen lambs for the dying babies."

During her time there, Hilary has encountered young mothers in situations even more grave than her own.

"In the last few months, there was a 15-year-old who not only found out she was pregnant but learned that her baby was terminally ill. She was shunned by her classmates, but her 16-year old boyfriend rose magnificently to the challenge.

"She ended up giving a talk at her high school which even moved the headmaster to awe. Her child has since died, still in utero, at 36 weeks.

"Then there was the couple who had just found out that where their child's brain was supposed to be was mostly tumour. They couldn't get to the hospice on time so the hospice went to them, and they got to celebrate their baby – a daughter – for three hours.

"As far as I know, America is the only place in the world with refuges like this for people like us. Maybe Ireland could become the second, especially since the figures show that Irish women are much more likely to carry a disabled baby to full term."

As Hilary deals with the normal physical ups and downs of pregnancy, she has had to cope with months of anticipatory grief, preparing to say goodbye to a little girl she will have only just met. She has also had to learn how to manage the joy of unwitting others when they congratulate her on imminent motherhood.

"The rawness is inevitable when that happens. As the months wear on, I have shared my story with more people. Responses have ranged from the extraordinarily sensitive to the supremely clumsy, and everything in between. You get the blank, palliative reassurances ('everything will be fine'), the anodyne ('you'll have a little angel'), the narrowly rationalistic ('better dead than alive with such defects'), and the nonplussed silence of shock.

"I'm more sensitive to things I never was before. I overhear, not without some wryness, the lamentations of a mother-to-be, deploring the obsession with blue and pink and the relative absence of green-and-yellow baby clothes in the shops. And I think what worries some people have.

"The other day, my friend's voice was cracking as she recounted saying goodbye to her son on his first day at school. I thought, but did not say, that at least he gets to go to school.

"But in all the disarray of such a journey, I have witnessed an explosion of solidarity which has given me great strength, joy and hope.

"As for Margaret, come Christmas, we'll dress her in her little cream dress and cherish her a lot. Then we'll say goodbye.

"I know our lives will be the better for having met her, even if it is only for a few hours or days."

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