Loving Damien – a little boy of great spirit

Categories: Care.

International Nurses Day is celebrated around the world every May 12, the anniversary of Florence Nightingale’s birth. The theme for 2015 is : Nurses: A Force for Change: Care Effective, Cost Effective  The story that follows was written by Sister Alex Daniels, a paediatric palliative care nurse who works at the Sarah Fox Convalescent Children’s Hospital in the city of Cape Town in South Africa. The story highlights how important nurses are to the care of children with life limiting and life threatening illnesses.

Damien’s story begins
Damian was born by normal vertex delivery at Vredenburg hospital on 6thJuly. Damian and his mom were discharged home shortly after delivery. Vredenburg is a small West Coast town situated 137kms from Cape Town and the only public hospital in the district with limited facilities for children. A paediatrician from a secondary level hospital in Cape Town conducts an outpatient paediatric clinic once a month. 

Four months
At four months old, Damian was admitted to Vredenburg hospital for a lung infection. His condition deteriorated and after one week at the hospital Vredenburg, Damian needed to be transferred to Red Cross War Memorial Children’s hospital (RCWMCH). He was admitted to the intensive care unit at and diagnosed with a myocarditis (inflammation of heart muscle) and TB. Damian’s mother had been diagnosed with TB and had not complied with taking her own medication. 

Damian’s parents are from an impoverished community in Vredenburg. Both parents are relatively young, unemployed and have a history of suspected drug abuse. They had lost a baby through miscarriage before Damian’s birth and their relationship was described as “turbulent”. At the time of Damian’s admission to RCWMCH, his mother was admitted to Groote Schuur Hospital for medical treatment. During this admission the care team at RCWMCH made several attempts to contact Damian’s extended family and eventually he was discharged into the care of his maternal aunt. However while in his aunt’s care, he defaulted on his follow up appointment with the cardiology team at RCWMCH as well as his medication.

Nine months
At age 9 months, he was readmitted to the intensive care at RCWMCH. This time he was diagnosed with a dilated cardiomyopathy (a progressive disease of the heart muscle that causes thickening and eventually the heart to fail). With this admission he was very ill, he needed special intravenous medication to prevent his heart from going into failure as well as a blood transfusion. It was during this admission that doctors made the decision, based on his clinical condition that Damian’s heart was unlikely to recover and that further life-saving interventions such as ventilation in ICU, would be futile.
   
Palliative care
At aged 10 months, Damian was referred by the general paediatric team at RCWMCH to the palliative care service at Sarah Fox Convalescent Children’s Hospital (SFCCH). At this stage, he was on maximum oral anti – failure medicines for his heart, taking medicines for his TB and dependent on oxygen. He was in pain and irritable, had difficulty breathing, was fatigued, constipated and had a bedsore on his sacrum. He was failing to thrive, weighed only 6.3kg and was being fed via a nasogastric tube. When he arrived at SFCCH, all his distressing symptoms were attended to and very soon he was more comfortable and adjusting to his new environment. The nurses did an excellent job of dressing his sacral bedsore and in no time it healed.

One week following admission to the palliative care unit, Damian developed pneumonia and was treated with a course of oral antibiotics. His family was contacted and advised to make the trip to Cape Town to visit Damian as soon as possible as it looked as if he may not survive this infection. Fortunately he recovered from the pneumonia and although he was still in respiratory distress, he remained fairly stable though oxygen dependent.

Damien’s first birthday
Damian crept into our hearts with such intensity it surprised many of us. He loved to be cuddled and massaged, holding him seemed to soothe him, and reduced anxiety which in turn relieved his major symptom, shortness of breath. He occupied a prominent place directly opposite the nurse’s station and it was from this prime position that he could observe the comings and goings in the unit. Although he did not speak, his eyes spoke volumes and were completely irresistible, begging for engagement and love. Whilst Damian was a long way from his family home, he quickly grew accustomed to his surrogate family at SFCCH who cared for and fussed over him with deep affection. His new family shared many precious moments with him most notably, his first birthday. Staff members celebrated the day with many treats including a special cake and an outpouring of extra special attention for the day.

Reunited with his parents
It was through a St Luke’s Hospice nurse placement arrangement with SFCCH, that an extremely useful connection was made. Professional nurses enrolled on the adult palliative care course at St Luke’s Hospice visit SFCCH once during the course of their 8 month course in palliative care. Sister B works at St Helena Sandveld Hospice in Vredenburg and was a part of the St Luke’s group. It is through Sister B’s dedication and special interest in Damian that he was eventually reunited with his family. She went to great lengths to track his Mom down, took time to update her on her little boy’s illness and prepared her for the eventual reconnection with her son. On a chilly winter’s morning, a few days after his first birthday, Sister B accompanied Damian’s Mom to SFCCH.

Both Damian’s parents were subsequently able to spend precious time with him during his stay in the palliative care unit. The care team offered essential interventions during this time through medical and supportive counseling sessions with parents both together and individually. It was hoped that through these sessions, Damian’s parents were able to understand the extent of their child’s illness more fully; essentially he had an inoperable heart condition, was highly dependent on compliance with medication and oxygen and needed all his care needs met. His condition was compatible with a shortened life expectancy and this was explained to his parents. It was agreed that he should remain in the palliative care unit for terminal care since this seemed the best place for him to be cared for at the time.

Transferred closer to home
Damian’s condition remained relatively stable and in time discussions began with the hospital and hospice teams in Vredenburg to consider the prospect of transferring him closer to home. The paediatric ward at Vredenburg hospital agreed to accept Damian, Sr B and hospice team were willing to provide support and our palliative care consultant prepared a detailed advance care plan. It was with much trepidation, three months from time of admission, the care team at SFCCH waved goodbye to this special little boy as the West coast Ambulance service flew him to his home town of Vredenburg. 

Five months following discharge from SFCCH, I visited Damian in the paediatric ward at Vredenburg hospital. He babbled from his cot, was surrounded by colourful toys and enjoyed being read to and being cuddled. Though he remained short of breath, he had managed to stay relatively infection free and was growing beautifully. At the time he remained oxygen dependent and was fed via a nasogastric tube but had begun to eat small bits of food by mouth. I was delighted to meet his new surrogate family, the team in Vredenburg into whose hearts he has crept and who provided exceptional loving care to meet his holistic care needs.

Time to say goodbye
Just a few weeks following my visit, Damian’s condition deteriorated and the care team recognised that his terminal phase was nigh. He was moved from his bed in the side cubicle to a special spot created for him in the nurse’s station. From this special place, Damian was cared for by a devoted team of nurses for the last twenty hours of his life. 

On a sunny Sunday morning in February, Sr B sent the following message: “Heaven has beautiful new angel. This morning Damian has taken off his soldier’s uniform, stopped fighting and donned a pair of angel wings. He has been my baby, my Thor most of all, my mentor. He has taught me so much and now he is carefree in Jesus’s arms. Play in heaven, Damian as you could not on earth!”

This special little boy, whose name means Spirit, has had the ability not just to creep into our hearts but also to soften our hearts. With his beautiful big brown eyes, he invited us into his life, encouraged us to engage with his Great Spirit and by so doing we affirmed our own connection with Spirit. I believe that Damian came into our lives to teach us the power of unconditional love and for this lesson I am grateful.

About the author
Sister Alex Daniels is a Paediatric Palliative Care Nurse at Sarah Fox Convalescent Children’s Hospital in Cape Town, South Africa. 

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