Tuesday 23 December 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."

"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.

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