30 August 2008

Battling meningitis

Bruce Langoulant is on a mission to raise awareness of the insidious effects of meningitis.

MENINGITIS can destroy the brain and body within 24 hours of contracting the disease. Perth-based Bruce Langoulant found out the heart-wrenching way in 1989 when his second daughter, Ashleigh, at six months old, was rushed to hospital.

It was a hot, Christmas season in Western Australia when Ashleigh developed a fever. But Bruce’s wife, Jenni, did not suspect anything unusual when she brought her to their regular general physician for a check-up.

But the next day, the doctor felt compelled to call and asked the Langoulants to bring their baby for him to re-examine. It became apparent that Ashleigh had more than a fever. Her listlessness and the red rashes on her little face were tell-tale signs of meningitis. The disease can cause 20% of its sufferers to experience life-long disabilities, and spells death for another 8%.

Bruce Langoulant’s family. Ashleigh is in the middle.

Up until then, Ashleigh was a picture of health. She met every developmental milestone. A video of her as a baby shows her crawling cheerfully, exploring her little world.

But when the bacterial pneumococcal meningitis attacked her brain and spinal cord, Ashleigh lost her sight, hearing and mobility. For the next 18 months, Ashleigh lived in a world of darkness before she regained her sight.

But at 19, she remains deaf and has to undergo regular physiotherapy to tone her muscles following the loss of control of movement caused by cerebral palsy. She is also taking medication for epilepsy.

As Bruce notes in his recently launched book, Meningitis: A Tragedy by Installment, “Meningitis is an insidious illness occurring in ones and twos across the country on a regular basis. It is like a tragedy, but by instalments.” His conclusion is based on the 300 families across Australia who responded to a survey he initiated through the newspapers.

Ashleigh’s debilitating condition means she has to be cared for round the clock. Bruce and Jenni take turns to clean and feed her. They have two other daughters – Jessica, 22, and Courtney, 16.

Carrying her, wheeling her and dressing her are part of Bruce’s routine. Because Ashleigh is unable to communicate in the conventional way, it can be tough at times for the family, especially when she is about to have her menses. “Ashleigh is like a six-month-old trapped in the body of a 19-year-old,” says Bruce.

He recently flew in to Kuala Lumpur on the invitation of a newly formed parents support group called Pro-active Parents Group.

Determined to help other families avoid the potentially devastating disease, Bruce became a parent advocate in 1992.

Over the past 16 years, Bruce has been diligently raising awareness, lobbying and mobilising parents and the medical fraternity to work together towards making informed decisions.

He established the Meningitis Centre in Australia. He also serves as chairman of the Disability Services Commission, a governmental department in Western Australia that manages accommodation, therapy and support services to families and individuals who have physical and neurological disabilities.

Bruce also travels overseas regularly in his capacity as president of the Confederation of Meningitis Organisations that connects parents support groups globally with health and research organisations.

In Australia, for instance, Bruce was instrumental in getting the government to mandate free pneumococcal immunisation whereby babies born from Jan 1, 2005, receive three doses of vaccines against meningitis at two, four and six months. The elderly over 65, and children born between Jan 1, 2003, and Dec 31, 2004, are also vaccinated.

(In Malaysia, immunisation against pneumococcal meningitis is optional and is available in private clinics).

Bruce admits there had been times when he and wife asked themselves: “Would we have done it differently if we knew about meningitis?” Not wanting other families to suffer the same fate, Bruce is driven to do his utmost to reach out to as many parents as possible.

Bruce is well aware that he is pitted against the global anti-vaccine group which asserts that certain vaccines can impair the immune system and the brain. For instance, the triple antigen for mumps, measles and rubella had been blamed for the rise in autism.

But he clearly believes vaccination against diseases outweighs such fears. “We have to accept the fact as the world population grows, with the attendant impact on hygiene, health and resources, we can expect more vaccinations,” he asserts.

Bruce cautions parents who choose to delay or abstain from vaccinating their children. “Ultimately, parents must take responsibility for the choices they make for their children.”

Not one to blame doctors who miss the signs or misdiagnose, Bruce urges medical professionals to work with parents. “If the parents are coming back to see you with their child, don’t treat them like they are over-emotional, out of control. Work with them.”

In the end, like all doting parents, Bruce’s hope for Ashleigh is for her to be safe, healthy and loved.

One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to dignitytm.net.my. For enquiries of services and support groups, call Malaysian Care ( 03 90582102) or Dignity & Services ( 03-77255569).

Danger signs

Symptoms of meningitis in infants:

Fever, possibly with cold hands and feet

Refusing feeds or vomiting

High-pitched moaning, cry or whimpering

Dislike being handled or fretful

Neck retraction with arching of back

Blank and staring expression

Child is difficult to wake, lethargic

Pale, blotchy complexion

Floppy or stiff or jerking movements

Symptoms can appear in any order and may not all be present.

Source: The Meningitis Centre (www.menin gitis.com.au).

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