Nola D’Enis’s daughter was happy, healthy and adored. Then one day she went to sleep and never woke up. Her family may never know why. Here’s her story
THE terrible, terrible chasm that opens before you when you lose a child is a terrifying no man's land. There is no escape, no place to go where you feel comforted or safe. Once the numbing shock and horror begin to recede, real life cannot simply return — there is a gap the size of a laughing two-year-old that cannot be filled. What did you do before she died? Your life revolved around her. What did you do before she was born? You read, shopped, gossiped, lunched, wrote, did housework. What do you do now when all this becomes meaningless?
Other people's children are torture. Blonde pigtails taunt, and a cr y of “Mama” can reduce you to a hysterical woman in the aisle next to the fabric conditioners, where you have been trying to decide whether it is harder to have the familiar one — the one that reminds you of her — or to change completely and taint your clothes with the smell of treachery rather than regret.
I went shopping alone for the first time four weeks after Maude died. I went to a large local supermarket where I had been rarely with Maude. I went out of necessity — we had run out of milk — and out of a morbid curiosity to see if I could do it.
I found myself in the sales section. Among the clothes. I love clothes and adore shopping. But I couldn't summon up the desire to want anything. I kept my back to the children's aisle. I avoided eye contact with the mothers and their children and I jerked my eyes away from any trolley that had small pink dresses balanced among the groceries.
The cashmere jumpers were down to 25pc of their original price. I pulled them out of their boxes. Didn't want them. But I should want them — because that is what I had been before, who I had been before she died, someone who wanted cashmere. So I put three in my trolley.
I went to the checkout. The cashier passed my jumpers through the till. There was no reduction shown. I told her she had made a mistake. She rolled her eyes. She was dismissing me and I knew why. I looked odd, wild, a little deranged with my bitten lip and puffy eyes.
Years ago the bereaved and the bereft wore black. We dressed in our grief. Now we wear black because it is chic and slimming. There is nothing to mark us out as being on the edge of the world. We no longer carry a protective shroud asking society to treat us gently as we are broken. We just look mad.
I looked behind me at the impatient queue, flicking my eyes away from a young child. I bit my lip so hard I could taste the blood. I paid and went straight to the enquiries desk.
There was a small boy in front of me, the same age as Maude. It is a boy, I reasoned to myself. You can cope because it is a boy. Then his father started playing with him and he started to gurgle.
I turned away. I could not bear to look at or listen to them.
I waited my turn.
When it came, my lip was bleeding. The woman looked at my lip and my damp, dabbing tissue. I showed her the jumpers, the till receipt, said that they were on sale. She shrugged and said that she could see no sales stickers on the jumpers. She sighed and rang the knitwear department.
I wondered whether to run, or just walk out. Would I leave the jumpers or take them? Would they run after me and stop me? Would that make it worse?
The phone rang. The jumpers were at 75pc off. She reimbursed my money wordlessly. I walked out of the shop, head down but not crying, pushing my trolley hard. My mobile rang.
“Hello” came a warm and cheerful female voice, “How are you doing?”
I cracked, and started to bawl loudly. People stopped and looked. An old lady patted me on the arm as she went past, her kindness making me cry all the louder.
“Where are you?” came the voice on the phone. “What are you doing?”
“Good. That's brilliant. That means you are getting out a bit. What have you bought?”
I looked down at the plastic bag containing three cashmere jumpers.
“Three jumpers ... cashmere.”
“Hey. Three cashmere jumpers. Go for it. What colour are they?”
“I don't know”, I said, “I can't believe it. I'm sorry, I don't know”.
I managed to find the car. I got in and caught sight of myself in the rear mirror. I was unrecognisable. I did look mad. I drove home somehow.
I had forgotten the milk.
I have always strived for control in my domestic life. I believed that with enough effort and good intention everything would be alright. But fate mocks mortal plans.
On Tuesday January 2 this year, I went into hospital for a routine operation on my nose and sinuses. The evening before I went into hospital I went shopping with my husband. I bought 15 pairs of My Little Mermaid knickers at a knockdown price: I was going to potty-train Maude after the operation. I had it all worked out.
The operation went as operations do. On Wednesday morning Jean-Luc came to visit me. We talked about the children. We talked about lunch. He left for work. I rang home and said hello to my children. Maude came to the phone and yelled “Bonjour Maman”. First and last time ever.
Afterwards Maude went down for her sleep. Jean-Luc went up and on passing her room and hearing her babbling, gave her a hug and blew her nose.
Minutes later, her 15-year-old sister felt that something was not quite right and went upstairs to check on her. She found Maude blue in her cot.
Two hours of sustained resuscitation by doctors and paramedics failed to revive her. Maude had died during a routine afternoon siesta. The impossible had happened. There are some things you cannot control.
As an ex-health visitor I have always been a little neurotic about cot death. My babies have been subjected to all the latest research; flipped according to epochal and current received research, from side to back to end of cot. They have slept under the correct tog, avoided cigarette smoke like the plague; their bedrooms were never toasty warm. I did it all by the book. And Maude died.
Maude's death was not a cot death. For one thing, she was too old.
Sudden Infant Death Syndrome (Sids) falls within a specific age range. Maude had no contributing factors — it was the wrong time of year, she was the wrong age, she was a girl, non-twin, good birth weight, steady percentile growth, breast fed until she was 14 months. Nothing fitted.
My husband and I were so quietly proud of all we held together. Our daughter Maude was the cherry on the family cake — a bright, bi-lingual little girl who was rarely ill and always laughing. But she died, barely two weeks after her second birthday.
I don't understand and I never will.
This lack of understanding may complicate the grief — but perhaps it has made Maude's death easier to cope with.
I was not there, but my husband and children were. If Maude had found a stray paracetamol, if she had bumped her head hard in the courtyard and no one had seen her, if she had swallowed a shiny piece of glass — none of us would ever have forgiven ourselves. Blame, guilt and grief are closely intertwined.
I don’t understand why — but I feel the need to defend Maude's death.
I tell everyone — friends and strangers — that Maude died of causes unknown, of Sudden Unexplained Death in Childhood. I have this need to explain. Toddlers don't just die, like ours did.
No one has heard of this.
Everyone talks of cot death and young babies when I speak about Maude dying, but two-year-old Maude’s heart stopped — and we don’t know how or why.
She was a vital lifeforce that simply ceased to be.
THE MYSTERIOUS KILLER
Sudden Unexplained Death in Childhood (SUDC) occurs in those over the age of 12 months.
SUDC is a diagnosis of exclusion, given when all known possible causes of death have been ruled out at autopsy.
SUDC is rare, with a reported incidence in the US of 1.3 deaths per 100,000 children, compared to 57 deaths per 100,000 live births for Sudden Infant Death Syndrome (Sids) in 2002. As a health visitor I had never known a child to die in this way or heard the term SUDC used. I have met no one here in France who has lost their child as we have.
Families often grieve in isolation, without information or resources. Too little exists to support families touched by SUDC and to research causality.
Very little is known about why healthy young children die. There is no reason. No cause. No prevention.