By the time that Emmanuel was two weeks old the extent of his medical condition was apparent. He was never well. He had been admitted to hospital on two occasions with Pneumonia and on the second occasion he was discharged as a very sick baby. He was on oxygen at home for 15 hours a day. On each occasion that his vaccinations were due, he was too sick to have them. There were occasional rays of hope but they were short lived. Two days before he died he developed a tumour in his throat. Once again Glenda was told to take him home, he was dying. What no one knew was when or how he would die. In the end, Emmanuel died with immense suffering. His little body gasped for oxygen as the fluid in his lungs increased. The septicaemia that had spread through his frame caused his little head to swell and his eyes to close. Glenda nursed Emmanuel throughout the night whilst constantly seeking help to alleviate his suffering. The sense of helplessness that invariably leads to anger, frustration and disappointment was overwhelming.

Glenda knew that he was extremely ill and dying and she had been advised to take him home from the hospital and make him as comfortable as possible. But it was agony to see him suffer so. After trying a number of institutions to ask for assistance, she was greeted by ringing telephones or answering machines. It seemed that because he was dying in the early hours of the morning, the assistance he needed to alleviate the suffering during his final painful hours was not available. Emmanuel was dying at the wrong time of the day! A kindly doctor with immense wisdom brought some understanding to Glenda during that night. His advice – “Give the nightmare or live the nightmare”. There was no doubt in her mind that she would live the nightmare. She knew that she had to stay with him, to hold him and comfort him through his final hours.

Glenda, by her own admission, is not easily phased having successfully raised five children of her own, but she had to call upon all of her emotional resources to stay strong for Emmanuel. At 05.25am on Wednesday, 24 January 2001 at the age of 4½ months Emmanuel died in her arms, to the music he loved, knowing that he was loved. Glenda made a vow to all who would listen, that what happened to Emmanuel on that fateful day in January would never happen to another child in her care. Never again would she be told that help wasn’t available !

Emmanuel’s death, the senseless suffering, the logistics of an oxygen tent in a home where already space is a major problem, where to put him when he had died and the lack of medical intervention when if he’d been a horse they would have shot him, confirmed and strengthened Glenda’s resolved to have a hospice where the babies are known and loved!