Providing care and compassion

Published Mar 31, 2014

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Before Sandiso Myeni knew how to spell his name, he could already call out the word nebuliser. The 5-year-old has chronic lung disease, a life-threatening condition which makes it difficult for him to breathe.

The prognosis is not good, with doctors unsure how long he will live as his condition worsens with time.

Before he was diagnosed, his mother, Mantombi Myeni, 29, would panic every time Sandiso went into respiratory distress. “He would take long breaths and his face and chest would sink in.”

She would rush him to the hospital, crying hysterically, not knowing what was happening. It was during one of these visits that she met Dr Julia Ambler, a specialist in paediatric palliative medicine.

Ambler is the co-founder of Umduduzi, which provides medical and psycho-social care for children who are terminally or chronically ill. They also support parents. Support is especially needed by Myeni, whose parents are dead and she also has an 11-year-old child.

Umduduzi, which means comforter, was established in 2012 by Ambler and Tracey Brand, a social worker. The pair used to run the Durban branch of Bigshoes Foundation, doing the same kind of work. However, when the organisation was dissolved, they felt it was their ethical and moral duty to continue providing palliative care for children in the province.

They bring compassion, dignity, relevant care and relief from discomfort and pain to children diagnosed with a life-threatening or life-limiting illness as well as provide mentorship and empowerment to caregivers.

“They sat me down and explained exactly what my son’s illness was, how it worked and how it was affecting him. Although knowing my son would die was painful, it was better knowing how to care for him.”

Brand said the biggest problem with some health professionals was that they were not always honest, especially when having to deliver bad news about children.

“It’s not natural or easy to tell anyone that they will outlive their children, but it’s better to give them the information, to plan for the worst and pray for the best.”

Brand said this allowed parents to make informed decisions. “No one will hate you if you say their child will die and they live, but saying they will live and they die is another issue,” she said.

She also encourages getting rid of the “conspiracy of silence” and the belief that children will not understand or handle what is happening to them. “Children are amazing, some will want to bequeath their favourite doll or be involved in the treatment.”

Sandiso cannot play with other children for very long nor go to “normal” school. He also cannot drink liquids. Instead, they are fed to him through a tube in his stomach. At times, he spends up to two months in hospital. He may be too young to understand a lot about what is going on with him, but he knows that he coughs and cannot breathe properly at times. He knows to ask to be nebulised so that his breathing can be eased by the mist of medicine he inhales.

“Seeing him having difficulty breathing hurts me. I can’t imagine the pain he goes through and I wish I could take it and put it in me, but it brings me comfort that I can make things easier for him,” said Myeni.

Umduduzi works in nine state hospitals in KwaZulu-Natal including an outpatient clinic at the KZN Children’s Hospital. They do ward visits, train health-care workers, such as doctors and nurses, on how to provide palliative care to children. This is important because palliative care is not a recognised area of specialisation, but rather a small component of medical qualifications.

They give advice on the control of pain and other symptoms. At the latter stages, they also provide families with advanced care plans so parents will know what to expect and what to do.

Brand said rather than bring children back to hospital, a strange environment where they may have to endure the pain of getting medication intravenously, some parents choose to control the child’s pain and many prefer their child to die in the comfort of their home. Ambler and Brand support parents all the way, doing hospital and home visits and assessments as well as supporting parents through bereavement.

“Their support gave me strength and courage to accept what is happening to my child, so that if God takes him I am okay and have made the best of the time I have with him,” said Myeni.

For the work she does, Ambler was named the KZN 2013 Lead SA Hero of the Year.

When asked who Ambler was, Sandiso said: “She sits with my mom in hospital.”

Through the care and support of Umduduzi, the quality of life of Sandiso and other chronically and terminally ill children is improved through better pain and symptom control, and where death is inevitable this happens in comfort and with dignity.

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IMPORTANT TO TRAIN PEOPLE IN DIFFERENT AILMENTS

Sibongile Nene opened a crèche in Nyuswa in Botha’s Hill. She thought she would just be minding children while their parents were at work. However, as it grew to 60 1-month-olds to 4-year-olds, Nene realised how great the responsibility was.

“Parents would bring sick children to crèche and we didn’t know what to do with them, how to avoid them infecting other children or what we can and can’t do in terms of care.”

With her frustration growing, she turned to Umduduzi which offers a training programme for child-care workers in day-care centres, to foster and house mothers, people working in children’s homes or who look after orphaned children and abandoned babies.

Training co-ordinator, Hlengiwe Gumede, studied social sciences specialising in psychology. This, as well as her being multi-lingual means she is able to run the programme at a pace and level each participant is comfortable with, making it more effective.

During the five days of training, participants like Nene are taught paediatric first aid, hygiene, nutrition and growth monitoring as well as development and stimulation. They are also trained on common child illnesses and how to respond to them.

Nene said before undergoing this training, she had a very simplistic perception ruling unco-operative children out as naughty. Now she knows to look after each child’s nutrition, monitor their growth and development and how to stimulate them in a way which speaks to that particular child. She also imparts these skills to parents, with whom she now communicates effectively, thanks to the training.

“I can now sit down with parents and talk about their child without it coming across as me telling them how to parent their child. Parents are so grateful. I even know when to refer them to take their kids to the doctor.”

Gumede said it was important to train people who work with children about different ailments to avoid panic.

“I teach them to manage illnesses and when to refer them to clinics. They know when to isolate a child so that they do not infect other children.”

The level of care increases, caregivers pay more attention as they can now recognise symptoms and can get a child attended to sooner.

“This often leads to early diagnosis which means there are greater chances of saving a child’s life,” said Gumede.

The specialised training up-skills caregivers, making them very attractive for employment. To date, Gumede has trained more than 2 500 people around the country, some during their days at Bigshoes Foundation.

It was while working at the foundation that Gumede first trained Linda Davis. Davis is the house mother at Domino Babies, a home for abandoned babies some of whom are HIV positive. She has recently done a refresher course with Gumede at Umduduzi. “I have been working with HIV positive babies for years and it was especially enlightening to learn from Hlengiwe the biology of the disease,” she said.

Davis believes people are scared of HIV because they don’t know much about it but for the stigma propelling myths and beliefs.

“Once you know more about it, you know it can be managed, it’s not a death sentence and you can go on to live a healthy life,” she said.

This was significant for her as the aim of Domino Babies is for the children they look after to ultimately be adopted into loving homes where they lead a normal, healthy life.

Mduduzi also offers HIV training for co-operates.

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HEALING PROGRAMME INCLUDES PLAY

The Umduduzi team believe play is an integral part of healing. That is why they established a play programme, Sithandeni.

The programme is run by Nomandla Mazibuko at Clairwood Hospital, which offers specialist rehabilitation services. After training with Gumede and consultation with a pre-school teacher, a structured, age-appropriate play programme was set up to stimulate children admitted to the hospital.

“Just because they are sick, it does not mean they do not have the right to be children,” said Umduduzi co-founder, Tracey Brand.

For three hours every day, Mazibuko incorporates physical movements in line with occupational therapy a child may be undergoing, with play activities. She works on a rotating curriculum which matches what is being done in school so that a child develops with his or her peers and is not slowed down by the long road to recovery.

The programme also teaches parents how to play with their children, improving communication.

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