Gift of life with a story to tell

The Times of London
My daughter’s premature birth inspired a book to help other families.

L
Lyra, who is now nearly three

The night that Lyra was born a thunderstorm raged outside the hospital in Chelmsford, Essex. At 24 weeks she weighed just 1lb 10oz (735g) and emerged still shrink-wrapped in the membrane sac that was supposed to nourish her for another four months.

A doctor cut her free with a scalpel, her tiny form slipping out on to the hospital bed in a rush of amniotic fluid; silence where her first life-affirming cry should have been.

She was scooped into a Tesco freezer bag to keep the moisture in her tissue-thin skin, then placed under what looked like a grill to keep her warm. A doctor blew into a straw to inflate her lungs and used a finger, pressing gently and rhythmically, to encourage her weak heart to beat.

My girlfriend lay exhausted, worn out by ten days of painful contractions and three hours of agonising labour. Then our daughter coughed and was bundled into an incubator. Someone asked what we wanted to name her; someone else asked if we wanted a priest. Then she was wheeled out of the ward and out of sight.

For the next five hours we were told that the doctors were “doing what they can”, a phrase at once empty and bursting with hope.

Tiggy and I sat together, hearing the labour cries of other mothers and the screams of other newborns, neither of us saying what we were thinking: “Is she still alive?”

The next time we saw Lyra she was in the intensive care unit attached to a ventilator that pushed her still-soft ribs up and down, a tangle of wires and tubes crisscrossing her tiny body.

Few hospitals are equipped to deal with very premature babies, so Lyra was transferred to a specialist unit at Luton and Dunstable Hospital. We followed soon after.

Leaving a maternity ward without your child is heartbreaking. During the next 11 weeks we saw it happen to other parents. I passed one couple as they picked careful steps along a corridor leading to the exit, their cheeks streaked with tears, eyes red, heads pressed together as if crushed into one another by the pain of losing their child. I had to gulp back my own tears.

For five weeks we lived in a tiny room just yards from the neonatal intensive care unit. The days bled into each other. We lived mostly in Africa, where we travelled often — I as a journalist, Tiggy as a photographer — but here our lives shrank to the distance between that room and Lyra’s incubator. We lived in a hyper-emotional state, constantly tense, on the edge of tears, suspended between stress at Lyra’s every setback and joy at her every progress.

Each time I approached the ward door I would peer through the porthole window, first looking for Lyra’s monitors, willing the digital displays to still be there, proof that she had survived another few hours.

Swaddled inside her incubator, Lyra was plugged into machines that flashed and beeped day and night, monitoring her heart rate, blood pressure, oxygen levels and breathing, injecting her with dopamine, caffeine, morphine, antibiotics, protein, sugar, blood transfusions and tiny drops of breast milk, painfully squeezed out by Tiggy.

Sometimes Lyra had so many probes, wires and tubes sticking into her that there wasn’t a free limb we could touch.

But as she gradually improved, gaining weight gram by gram, fighting off infections and learning to digest, she was slowly revealed: the feeding tube came out of her belly button, the electrodes were removed from her chest, the mask-like ventilator was replaced with a smaller device covering just her nose, the intravenous drips were pulled from her hands, arms and feet.

Tiggy cried as she held Lyra for the first time when she was a week old. We were beginning to be parents.

Soon we were allowed to hold her once a day. She was still attached to her monitors and had a feeding tube running into her nostril, but snuggling against our bare skin she would sleep peacefully, her usual spontaneous jerks and jolts calmed by our heartbeats.

The new respiration machine (called CPAP, Continuous Positive Airway Pressure) let Lyra do more of the breathing for herself, but sometimes she would forget and her plummeting heart rate would trigger terrifying alarms that brought nurses rushing.

We had nicknamed the CPAP that helped Lyra breathe her “snorkel”. The same day it was fitted a friend came to visit with a small, white, soft toy bunny as long as Lyra was, and we put it in her incubator for company.

Together these two things gave Tiggy’s sister an idea to write us a story about a small girl called Lyra on a dreamlike underwater adventure with her friend and protector, the white rabbit. Alice, who is an art director, drew the pictures and her documentary-maker boyfriend Peter wrote the tale. They called it Lyra and the Adventure of the Flying Fish, had it printed and bound and gave it to Lyra as a present.

It was three weeks before she was moved out of intensive care and into the “high dependency” ward, another fortnight before she was stable enough to be transferred back to Essex, weighing 2.2lb (1kg). Eleven weeks after her birth and still a full month before she should have been born, Lyra was at last allowed to come home. She weighed 4lb (1.8kg).

“When Lyra was in hospital we weren’t allowed to visit her so the book was us trying to get to know her when we couldn’t see her, when all we’d seen was the photo of her with her rabbit,” says Alice. “We wanted to tell a story to encourage her and, of course, her parents.”

The book, inspired by Lyra’s early struggle to live, is now being released by Phoenix Yard Books in the hope that it may help others going through a similar experience.

The story is an allegory of life in an incubator, beautifully illustrated and lovingly told. It begins with a photograph of Lyra lying on her tummy, as tiny as the white rabbit, and at the end is another of her grown, discharged from hospital and twice the rabbit’s height.

Today that same white rabbit is shorter than her arm.

We still don’t know the reason for Lyra’s early birth, but we know that without the full-time medical care she received in those first months she would not be with us today.

Lyra is now nearly 3, lithe and exhaustingly energetic, quick to laugh, curious and without a developmental hangover from her premature birth.

As I write this I’m sitting at my desk in our house in Nairobi, where I work as The Times’s East Africa correspondent. Lyra is running about in the shady garden outside, with the late afternoon sunlight filtering through the leaves of an immense eucalyptus tree. She is playing hide-and-seek with Tiggy, who is carrying our nine-month-old son Elijah on her hip.

He was born right on time.

http://www.thetimes.co.uk/tto/health/article3005421.ece