Terminally ill children given a lifeline

Wednesday, 13 February 2013

by Justin Foxton

Dr Julia Ambler

 

The day is a special one – a day of celebration. It is young Clement’s 11th birthday and he is loving every minute of it.

Smartly dressed in a pair of new jeans and a brightly striped t-shirt one would never guess that this was the same child that Dr. Julia Ambler first met some 18 months ago. Back then he was a skinny little boy suffering from acute pneumonia. Now he is all smiles and clearly enjoying himself.

Clement suffers from severe cerebral palsy. He has never walked or talked but enjoys a good quality of life with his doting parents.

When Doctor Ambler was first called into Mahatma Ghandi Memorial Hospital outside Durban to see this youngster, he was in a critical state. In constant and severe pain from regular muscle spasms and being fed through a tube in his nose, Clement would often choke. This would reverse any progress made in his fight against the pneumonia.   Clement was losing the battle.

As a result of the recent official launch of Durban based NGO Umduduzi, Clement and dozens of other terminally ill, pain-wracked children will now have access to the compassion, care and medical expertise of Dr. Julia Ambler – a specialist in managing children with life threatening or terminal illnesses.

“As one doctor put it to me in a recent conversation, dying is not part of our curriculum”, says Dr. Ambler as she describes the critical need for services to terminally ill and dying children. “Few medical practitioners – locally or internationally – are trained to manage and minimize pain and counsel a terminally ill child and her family. Dying well is not a concept that modern medical practise is particularly familiar with.”

And it is this concept of ‘dying well’ – known more technically as palliative care – that best describes the work of Umduduzi. The phrase, a seeming oxymoron, was coined by Dr. Ira Byock, a palliative medicine specialist and professor at Dartmouth Medical School in the United States. Underpinning the work of Hospice International, dying well is a vision that every person with a terminal illness deserves quality, meaningful life during the time that is left to him or them.

“Generally when people think of hospice care, cancer immediately comes to mind,” explains Tracey Brand CEO of Umduduzi. “However there are many other conditions that affect children. The conditions seen by paediatric palliative care specialists include heart problems, rare syndromes, complications of HIV, kidney failure and babies that are born too early. Children affected by such conditions may live for many years. They deteriorate slowly and their needs change constantly. Good palliative care can improve a child’s quality of life during this time.”

However up until now all over the world, terminally ill and dying children have been under cared for in terms of pain management, counselling and quality of life. This has been left up to hospital staff that have not been trained to provide these specialised services. As a consequence children have suffered unnecessary pain and been left to die without the care and assistance of paediatric palliative care specialists. With the launch of Umduduzi , South Africa is raising the standard of care for terminally ill children.

Dr. Ambler continues; “We counselled Clement’s parents, quite certain that things were only going to get worse but still hoping for the best.

Once we had his pain under control, he almost miraculously began to improve; his breathing became easier, his muscles relaxed and he didn’t choke quite as much. The doctors were able to remove the oxygen and take down his drip. The biggest miracle was that he started to smile again. He was ready to go home.”

Ironically, palliative care can often ensure that children live a longer and happier life. For Clement, the intervention of Dr. Julia Ambler was a life saver.

“One year later he is still at home, apart from a brief 4 day stay in his favourite hospital when the home suction machine used to clear his chest broke. Our organisation quickly organised a new machine and out he went again.”

But Dr. Ambler is emphatic on Umduduzi’s role; “We are here to support the work of the state hospitals. It is our job to ease the burden on everyone and to make a child’s last days or perhaps even years, as comfortable and as happy as we possibly can.”

If you would like to support the work of Umduduzi, please e-mail  tracey@umduduzi.co.za

SA – the Good News

 

Justin Foxton is founder of national awareness campaign Stop Crime Say Hello, The Baby Houses in Durban and the KZN Adoption Coalition.

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