Neil Berry, a Senior Lecturer in Clinical Psychology, lost his five and a half week old son a year ago. Here he explains how honesty with his children and the sharing of both sickness and bereavement made the loss easier to bear for the whole family.

Softening the blow

Preparing Sam 5, and Orla 3, for the arrival of their baby brother was not difficult. They would regularly ask to feel the baby kicking and would even talk to him as their mother, Ita, lay in bed. Even when he was nearly two weeks late and Ita had been in hospital for several days, they were quite happy to accept that babies don't always come on time. On the evening in early September when Cian finally arrived, however, I realised that their easy acceptance of everything was about to be tested. I did not know how far.

Cian was delivered on a Sunday evening by Caesarean section because there was evidence of foetal distress. Detailed ultrasound scans early in the pregnancy had revealed a partial blockage of the urinary tract, but we had been assured that everything else was 'fine'.

When Cian was born, however, it became apparent that there were additional problems. He was a reasonable weight at six pounds three ounces and had a sweet face with pixie like ears, but his feet and hands were clubbed and his ribcage was also slightly deformed. He had some difficulty with his breathing and was taken to the Neonatal Intensive Care Unit.

Once I had overcome my initial shock, I was faced with the task of breaking the news to Ita, the children and our families. I spoke briefly to the children on the phone trying to sound as positive is possible but adding, "He's a little poorly." The next day I told them about their new baby brother and his crooked limbs. In response to their question "Why?", I simply said that while babies are usually born fine, as they had been, a few are born poorly.

That day they were introduced to their new brother through the portholes in his incubator. Once they had overcome their initial shyness and come to terms with the strange machines that surrounded them, they talked to him and stroked him quite happily. As far as they were concerned they had a new baby brother.

What was wrong with Cian? When he was three days old we had been told that he had a low blood platelet count and this, together with the problems associated with his wrists, had led to a tentative diagnosis of TAR Syndrome (Thrombocytopaenia Absent Radius). This indicated a future involving many visits to orthopaedic clinics but little else as long as the blood problem didn't turn out to be too severe.

Towards the end of Cian's first week he was transferred with Ita to the Royal North Manchester Children's Hospital for further investigations in the renal unit. It was there, when he was 13 days old, that the definitive diagnosis was made.

It was Saturday morning, and Ita and I waited very anxiously for Dr Super, the geneticist, to appear. We had learned from the renal consultant only the night before that Cian's kidneys were in a bad state so it was proving increasingly difficult to drum up any optimism.

Dr Super arrived in his weekend clothes and led us into the unit office. He looked burdened. "I'm afraid you must prepare yourselves for some bad news." He spoke slowly in soft tones. "The results of the chromosome tests show that Cian has Edwards' Syndrome. Babies with this syndrome have an average life expectancy of about 90 days, but I must say that, in my experience, that's probably a little optimistic."

We asked all the questions we could think of and began making our plans. Dr Super said he had already recommended that "nothing meddlesome" should be done to Cian which might interfere with the quality of his life. We were assured that medical interventions would at best extend his life only a little. So we immediately removed the splints from his limbs and asked to take him home.

"You know Cian is very, very poorly," we told the children as we drove away from the hospital "How poorly?" asked Sam. "So poorly that he will die?" "Yes," we answered. Sam and Orla asked a few more questions, sounding intrigued rather than shocked, and then Sam asked: "How does a speedometer work, Daddy?"

We arrived back at the Neonatal Intensive Care Unit to find a room specially prepared for Cian. A mobile we had liked was over the cot and our favourite romper suit was lying on it. We were given a crash course on how to insert a nasogastric feeding tube, all the equipment we would need for his feeds and a superb amount of empathy, then we loaded our car and drove Cian home.

We adjusted reasonably to our new lifestyle. Cian had to be fed through a nasogastric tube every three hours and the breast milk expressed in between feeds, but he was an "easy", tranquil baby. He seemed to enjoy being held and having his hands stroked, and particularly liked being bathed.

We did our best to live as normally as we could. Cian was taken out in the pram and went to the mother and toddler group with Ita and Orla. We kept Sam off school for the first week to make sure that he did not feel excluded. He and Orla spent their time at home much the same as usual, except that they would stop what they were doing from time to time to give Cian a cuddle or to help bath him or change his nappy.

Much to our surprise, there was never any indication of jealousy. They didn't seem to resent the amount of time and attention he received. At night we all slept in the same room partly because Granny and Granddad were staying, but also for emotional security and closeness. Sam and Orla slept in their bunk beds and Ita and I on mattresses on the floor with Cian sleeping on a pillow between us.

Although he was not gaining any weight, Cian seemed to us to be "holding his own". It was not long before we allowed ourselves fleeting daydreams about the possibility of spending Christmas with him, and even about his joining the tiny handful of "Edwards' babies" world wide who have survived beyond their second year. That thought, however, was tinged with the knowledge that all of the "survivors" have been profoundly handicapped, both physically and mentally.

Most of the time we realised that we had to prepare ourselves and the children for Cian's death. We gently reminded them from time to time that he would die, but their response was often, "I know that" or "You've already told us about that".

During the first week at home I made an appointment with a local firm of undertakers. I wanted to "desensitise" myself a little and to collect information so that we would know what to do when the time came. I felt very heavy hearted, but I was pleasantly shaken by the openness and flexibility the manager, Mr Loram, showed during our conversation.

We didn't like the idea of Cian's little body being embalmed or of make up being applied. We didn't want strangers coming to take his body away. We didn't want big black cars and sombre processions but we were not sure exactly what we did want. To all my suggestions came back pleasing replies: "That would be fine. . . you could bring him here yourself, if you like. . . I could carry the coffin in my estate car. . . you could take him in your car. . ."

But what do you tell children in such a situation. To a large extent we took our lead from them, answering their questions as honestly but as gently as we could. After Cian had been home with us for about 10 days, however, we all drove out to Blackburn's Pleasington Cemetery and Crematory. Ita and I hoped that it would provide an opportunity for the children to ask questions. They did.

Responding to their questions on that bright afternoon, we told them that when someone dies and their body doesn't work any more, you can't keep it because it would go bad and you can't just throw it away. "So you can do two things", we said, "You can put it in a special fire that turns the body into a special smoke which goes up the chimney and mixes with the air, or you can put it into the ground so that it mixes with the earth and helps flowers to grow. Which do you think would be best; mixing with the air or with the earth? Their reply was as matter of fact as if we'd asked them whether they wanted bread or toast for their tea; "With the earth."

After three and a half weeks at home, Cian developed a cold. At three o'clock on the following morning, we were concerned that his breathing was noisy and laboured so I took him to the hospital. The doctor on call found that his chest was clear but, in retrospect, his face betrayed some concern. He indicated a willingness to admit him, but assumed that I would want to take him home. I nodded and feeling reassured and relieved, I drove Cian home.

The next day his breathing continued to be noisy, but he seemed comfortable and alert. Then, just after six o'clock, as I was pottering about in the kitchen, I heard Ita calling me from the front room. Her voice did not sound alarmed, but there was some sense of urgency. She was kneeling on the floor using the breast pump and Cian was lying on the changing mat beside her. Sam and Orla were sitting on the settee . Cian was silent.

He had simply stopped breathing. We called the children over. "We think Cian may have died." While Ita phoned for the doctor I made some attempts to resuscitate Cian but his body stayed perfectly still. Sam picked up his brother and carried him over to the settee where we all cuddled him. The doctor came and went. Then we all gave Clan a final bath and dressed him. The children played quite happily, returning to the front room every so often to cuddle him; Orla was delighted that she was able to carry her brother around without his protesting. It was a strange but peaceful evening.

We knew that Cian would not be buried for about five days, so the next day, a Friday, we all got in the car and drove him to the funeral home. The staff showed us to one of the available rooms and indicated a wooden shelf at the side of the room. "Just leave him there and we'll take care of him" We felt we couldn't just place him on a bare shelf and walk away, so we asked if they had a coffin we could place him in, we hadn't realised that he would have to be measured beforehand. Cian, wrapped snugly in a baby suit, cardigan and shawl, would not fit the only coffin available. So we were invited to return in two hours.  When we did so. The wooden shelf was decked with soft toys, and a lovely little coffin was in the middle of the room. We tucked him in and left, sadly, for home.

We all visited Cian each day he was there. On Sunday, however, concerned that his appearance might change significantly before the burial on Wednesday, we kissed him goodbye and placed the lid on the coffin. The four of us then took a butterfly nut each and, once the children had finished arguing over which corner to take, we sealed it shut.

We had decided to bury Cian in a small babies' section at Pleasington Cemetery and, with the complete agreement of our families and friends, only Ita and I and the two children would be there.

Wednesday arrived, with a clear blue sky and warm sunshine. It was a spring like day. We drove to a local flower shop and the four of us each selected flowers to place on Cian's grave. Then we collected Cian from the funeral home and drove to the cemetery with Ita and the children holding the coffin on their laps. Our two chosen priests Catholic and Anglican were waiting for us at the grave side and the manager of the funeral service stood by. We lowered Cian's coffin into the grave and the priests conducted a ceremony lasting only about five minutes. We finished, at Ita's request, by singing three verses from All Things Bright And Beautiful. Then the grave was filled in and the four of us were left in the warm sunshine to tidy it at our leisure. Ita and I cried quietly, the children played and we took photographs. It was a sad but lovely day.

Sam and Orla spent that day much as they might any other. They accepted Cian's death as another interesting event in a life full of fascinating things. The stillness and stiffness of his body, the cemetery and the burial held no fear for them. They participated fully in all aspects of Cian's life and death and they now visit his grave with us quite happily, as long, as it doesn't mean missing Tom, and Jerry. There have no delayed reactions in the months since he died. Notwithstanding our own uncertainties, we have emphasised to them that "It was only Cian's poorly body we buried, he is fine now and happy in heaven with Jesus." They talk about him and look at photographs quite happily, showing full awareness that he is not coming back. "Does Jesus have pram?" Orla once asked, "Of course he does!" we replied and she smiled, quite happy.

Ita and I have no doubt that for Sam, Orla and ourselves, 'twas better to have loved and lost than never to have loved at all. We are sure that we were right to involve the children as we did. Our actions were informed in part by psychological principles but were based above allowed on our understanding of our own children. We do not assume that what was right for us would necessarily be right for others, we would hope they would be allowed to find the right road for them, just as we were. We were able to enjoy the short time that Cian was with us. We hope, too, that his quality of life was such that ''twas better to have lived and lost than never to have lived at all.

Neil Berry, Senior Lecturer in Clinical Psychology.

Reprinted from SANDS (NSW) Newsletter, April 1990.