Life after Maude

Nola Denis wrote movingly on these pages about the death of her toddler. One year on, she describes how the arrival of a new baby has set the family on the path to healing

"You don't have much luck, do you?" said the orthodontist, looking down at my baby, asleep in his car-seat. We sat in an uncomfortable silence as I weighed up my response. What I wanted to do was to leap over her desk, shake her Chanel glasses off her nose, and draw blood. I wanted to shout that I was 43, that it was a miracle that my son had been born, and that I considered myself fortunate.

What I actually did was the opposite. My three older children were all at different stages of orthodontic treatment with this woman, and the fallout after assaulting her would have entailed vast amounts of energy that I did not possess, so I muttered, "Well, we all think he is wonderful", and taking my chequebook out of my bag, meekly wrote another large cheque for dental treatment.

My son was born in December, almost three years, to the day, since his sister was born, and just under a year from the anniversary of her death. His name is Edouard, and he has blue eyes, large hands and a wide, gaping, gurgling smile that lights up his face and makes us all laugh.

The orthodontist's trained medical eye had coolly assessed my baby and found his flaws, where we found only perfection. Edouard has craniostenosis – the cranial plates have fused, making neurosurgery unavoidable. I still feel like a lottery winner when I look at him, as though I have a second chance to get things right, a chance that I don't take for granted. I still don't know what went wrong – why his sister died and what could we have done to prevent it.

Maude was a victim of sudden unexplained death in childhood (SUDC), two weeks after her second birthday. She was a live wire, a happy, laughing little girl who was rarely ill, and the only sign, the day she died, was that she seemed tired as she was put down for her afternoon sleep. Fifteen minutes later she was dead.

I miss her more than I can say or describe. Talking to one of my other children, months after she died, I tried to explain how I felt – how I loved all my other children but I still missed Maude. The only analogy I could find was banal – it was like missing a tooth: you could feel all the other teeth in your mouth and you still wanted and needed them, but your tongue found itself, time and time again, going to the hole where there was once a tooth, and now there was just an empty space.

Edouard was never meant to fill that gap. When Maude died, I was desperate to have her back. I would play mental games with myself – if the lights go green before you get there, it will all have been a nightmare and when you get home the pushchair will be back in the hall. I would hold my breath as I entered the house, praying that I had been dreaming and that everything would be all right. It never was.

I could not approach the school, hysterically sobbing when I tried. I avoided certain shops, friends with young children, places I had been to with Maude. I shied crazily away from little girls as though they had leprosy. A small child, dressed in pink with a new satchel on her back as she proudly walked to her first day at school, had me shouting like a madwoman, "That should have been Maude!", then screaming her name, over and over again – "MAUDE, MAUDE, MAUDE" – calling to a child who would never reply. I could hear myself but I could not stop myself. The little girl and her father didn't hear me – they had crossed the road, intent on their destination. A trio of elderly women and their dogs, wrapped up like babies, watched me curiously. They knew who I was.

The children also suffered, and two were hospitalised. My daughter needed time out to deal with the unimaginable. She needed to stop playing the game that I had been fooling myself with – that she would suddenly wake up and it would be all right, and if it wasn't, it was her fault.

My husband and I swung between clinging to each other in our misery and hating each other in our private grief. Fused by a common anguish, we whirled giddily through the days, just surviving, pretending to each other and ourselves that it was OK, that life was going on and that we were still a part of it. Meals were cooked and eaten. Costumes made for the school carnival. Summer came and went. In the midst of all this, I fell pregnant. We desperately wanted another child. I cannot say why. I wanted Maude and another child, and if I could not have Maude then I would have a brother or sister for Maude. I went to see an obstetrician – a wise and gentle man who told me that the women most likely to fall pregnant were those who had recently lost a child, or those accepted for adoption. A month later, I was pregnant. I knew the week before I took a test that I was pregnant, and I knew straight away that it was a boy. Edouard's expected date of birth fell neatly between Maude's birthday and the anniversary of her death. We could not imagine him being born on either date, so the decision was taken to induce him three weeks early. The first time I saw my solemn, blond baby was in his delighted father's arms, following a Caesarean section. Initially, I did not dare to look too hard at him, I could not believe he was actually there, and alive, and ours.

He was unlike any of my other children – with his huge hands and feet, and a total disregard for my adoring gaze – or indeed anyone's. He was a self-contained individual who, from the first, had no intention of following his missing sister or filling the gaping chasm left by her absence. Edouard just was. It was up to us to adapt to him.

At first I thought he was blind. He had none of that intent fascination that babies have for their mother's face. He looked at me, then his gaze slid away effortlessly. I would jab at my son, flick my fingers in front of his eyes, search for clues that he could see me. I knew there was something not quite right. He was perfect, but I could not quell my nagging doubt. His head was a funny shape. I was reassured that it was positional – that it would right itself in time. I wanted to be sure. I had heard of a paediatrician in Bordeaux, where we live, who was running a conference in January on birth following the loss of a child.

I decided to take Edouard to him. He listened to me and my husband, and then offered to have a series of tests run on Edouard. The cardiac results were fine but the cranial scans and X-rays showed the reason for the "chiffon" shape to Edouard's head. Edouard has craniosynostosis – the sagittal suture at the back of his head has closed, leading to craniostenosis, where the bone fusion leads to a skull deformity. He has had an operation on his skull to open the fused bones and allowing normal head growth and development to take place. It is a fairly common anomaly, affecting roughly one in every 2,000 births.

He was operated on in early May. The initial results of the surgery are aesthetically stunning, with a fine scar running from ear to ear on his now perfect head, and he was home within the week.

To be honest, I was relieved when I found out what was wrong with my son. I knew, I just knew, that there was something not quite right. I alternated between thinking that it was my training as a health visitor that had led me to look for problems, and worrying that the loss of his sister had made me neurotic and unable to believe that it could all be easy sailing. And I am still neurotic. The alarms on Edouard's crib are for me, not him. I cannot sleep with him in the crib next to me, unless there is the chance that I will be woken up the moment that there is a problem. I shake him gently, feel his chest, touch his hands, too often. I hold on to him in the bath as though he was a wriggling fish, not a passive smiling baby. I think of dangers that I never imagined with my other children.

In spite of all this, I am enthralled by my son every day: by his being, his development, his place in our lives. I am amazed to find that I am actually enjoying his babyhood, and that I am able to believe in him and in us. He is healing us, in his own way – it was never his role but it is a place he has assumed.

Perhaps I was initially too intense with him – I wanted him so much and his longed-for presence emotionally swamped me; I overwhelmed him with my desire for him. He did not so much ignore me as tolerate me. He slept, breastfed and placidly accepted his entourage but there was little interaction on his part.

Then one day, he literally "woke up". At four weeks old, sitting in his bouncy chair, he unexpectedly looked hard at me and then at his surroundings, and followed me as I stooped to pick him up. Since that day, he has progressed rapidly – I can no longer have him on my lap when I type as he swoops at the keys and bats my hands. He gurgles and smiles and rolls, and I am delighted and relieved that he is finally here with us in body and spirit.

Later tests revealed that Edouard is longsighted and has deftly learnt to accommodate his vision in order to focus. Perhaps the reason that he suddenly seemed to take an interest in me was that he finally could see me. It is an easy problem to come to terms with. After all that has happened, a baby having to wear glasses – and oh, what dinky glasses are available here in France for children – is nothing to fuss about, nothing at all.

Edouard represents hope, the future, and has given us all that we dare to ask for – normality. Just normality.

I do not feel lucky. I feel blessed.

www.amileinmemory.com
www.fsid.org.uk
www.sudc.org

Sudden unexplained death in childhood: the facts

*Sudden unexplained death in childhood (SUDC) is the name given to the unexplained, sudden death of healthy children of over 12 months old.

*SUDC is a diagnosis of exclusion, and is given when all known possible causes of death have been ruled out, following autopsy and investigation of the family's medical history. Little is known about why sudden death in childhood occurs.

*SUDC is extremely rare. In the US, the incidence is 1.3 deaths per 100,000 children. This compares with 57 deaths per 100,000 live births in the case of sudden infant death. Most health professionals will never have come across a case of SUDC.

*Consequently, families often grieve in isolation, with little information or access to other families in the same situation. The US-based SUDC Program www.sudc.org can put such families in touch with each other.

*The programme also runs the SUDC Research Project, to advance and bring together medical research on SUDC.