Unbearable burden of care

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Gary Clarences Facebook profile picture with his twin sons, aged 3. Clarences wife Tania is suspected of murdering the twins and her daughter, 4. Photo: Facebook

Durban - This week we heard the news that a South African mother living in London with her family had allegedly smothered three of her four children because she could no longer endure the agony of their severe disability.

Tania Clarence and her husband, wealthy businessman Gary, live in the upmarket suburb New Malden in London.

Acording to friends Clarence’s life was a nightmare of round-the-clock vigilance as she struggled to care for twins Ben and Max, 3, and their elder sister Olivia, 4. All three had inherited spinal muscular atrophy (SMA) as a result of both parents unwittingly carrying a faulty gene.

The couple also have an older daughter who is unaffected by the condition. Clarence’s pregnancy with the twins had been reportedly too far advanced for abortion to be an option when the couple was told that Olivia had SMA.

They are also believed to be committed Christians. At the time of the tragedy, Clarence was reportedly critically sleep deprived and depressed because the children needed to have medication hourly, were tube fed and incapable of independent movement.

She had limited part-time assistance and told a friend that when she approached the British social services she was made to feel that she needed to “buck up and get on with it.”

In addition, medical specialists have said the children were not expected to live much beyond the age of five.

Clarence appeared in court charged with the children’s deaths at the end of last week, but has been remanded to an undisclosed psychiatric hospital for evaluation to determine her mental state at the time of the killings, and whether she is fit to stand trial.

Public sentiment varies. Women in particular, are both horrified and empathetic and have expressed sympathy for her terrible emotional stress.

It has been reported that Clarence attempted to take an overdose of pills, and also slashed her wrists after smothering her children.

SMA is a sub-category of the muscular dystrophy group of afflictions that are characterised by progressive muscle weakness and wasting.

There are more than 70 neuromuscular disorders in this spectrum and in South Africa one in 1 250 people will be affected by some form.

Dr Julia Ambler of Durban specialises in the care of children and has worked in the UK and locally for many years. She runs a hospice for terminally ill children at Clairwood Hospital and has seen a number of patients die.

Ambler said the agony experienced by Clarence trying to deal with not just one, but three SMA-afflicted children, “was probably acute”.

“There are three types of SMA, and this form is very rare. It is often hard to diagnose the condition or predict the longevity of the patient.

“Some fare better than expected, and attain greater mobility than anticipated, but judging by what has been written about these children, they did not have long to live.

“I am not a neurologist, I deal with the end days… helping sufferers and their families as their lives draw to a close. No SMA sufferer fares well, but some are luckier than others.

“The degree of support and love they receive is a determinant of the quality of their short lives, but for parents, the burden of their care can be intolerable. Depression is very common, as is self-blame and guilt.”

Ambler worked in children’s hospitals in the UK for six years and said the Clarence family would have had telephonic medical support and “step down” care after periods during which the children were hospitalised for treatment, but that respite care – whereby the chief caregiver is given a rest while the children receive specialised in-hospital care – was limited to two weeks a year maximum.

“It is not nearly enough, but in South Africa the scenario is even more dismal,” she said. “In the UK they have more centres with counseling facilities, and parent support groups. It is vital for the mother to have a strong support network, and if she can’t access counselling services, at least to have people to talk to about her concerns.

“The diagnosis means it is a 24/7 job to care of a sufferer. Parents do not get a break.

“Their whole life becomes consumed by the needs of the child. Apart from everything else that must be done for the sufferer, physiotherapy and postural drainage (draining fluid from the lungs) are vital.

“ Here you will wait months for neurological appointments and special schools are few and far between.

“Ironically, given the level of physical impairment, sufferers are usually bright children, and need intellectual stimulus. There is very little communication in SA between the departments of Education and Health.

“So parents can be left not knowing where to place their children for the best outcome. In the case of poor rural families without access to hospitals, the children are sometimes sent to live with relative strangers in the city, so that they can get the medical care they need. This increases their terrible sense of isolation.”

The doctor said the condition “is relentless and there is no hope of recovery. Parents come to accept that no matter how bad things seem today, there will come a day when they are even worse”.

The life of Clarence “would have been hell on earth. Particularly given that the family has one normal child and would have had to balance her life and needs with those of the ill children. Very few marriages survive because there is no space for the partners’ needs, and no normalcy to their lives”.

Sunday Tribune


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