MND patient saved with custom-made breathing device
Deon has recovered well from the procedure and his breathing has been restored to normal.
Deon Nel, who suffers from motor neuron disease, was saved recently thanks to the actions of his caring wife and the collaboration between local and international medical teams.
Deon, 56, who has been on a ventilator since 2008 to assist his breathing, can now only move his eyes. He was admitted to Netcare Krugersdorp Hospital’s intensive care unit (ICU) with severe and potentially life-threatening respiratory distress recently.
The specialist who has been treating Deon for many years, Dr Andre Hough, quickly established that after so many years of being ventilated Deon’s trachea has become enlarged, and his ventilation tracheostomy tube was no longer fitting properly. It was leaking air, which resulted in his struggling to breathe.
Deon’s wife, Bernice, said she is able to communicate with her husband to some extent through his eye movements.
“Deon ‘talks’ to me in this way, and I could see he was distressed. The problem was that no ventilation tracheostomy tube large enough to fit his enlarged trachea was available in the country,” she added.
Andre and Bernice established that Smiths Medical in the United States was able to custom-design tracheostomy tubes to meet patients’ specific needs.
Andre took measurements, life-size X-rays and scans, and liaised with doctors in the US and France, and with Smiths Medical and their local representative Babcock Healthcare to ensure that they got the design of Deon’s trachea tube absolutely right the first time.
The measurements and design were sent to the US where a special tube with two cuffs was especially manufactured for Deon. According to Andre, the custom-designed tracheostomy tube proved to be a perfect fit. Deon has recovered well from the procedure and his breathing has been restored to normal.
“This is the second time that Andre and his team at the hospital have saved Deon and I am extremely grateful to them. The doctors and staff at the hospital are like a second family to us. Andre also fitted Deon’s original tracheostomy in 2008, which has given him seven years of life so far. I am certain that Deon is thankful for that too.
“While Deon is bedridden and relies on a ventilator to breathe, he has an incredibly strong will to live, and I know he still wants the privilege of meeting his grandchildren one day,” Bernice says.
Motor neuron disease, which is also known as amyotrophic lateral sclerosis (ALS), is a relatively rare, progressive medical condition that results in damage to the nervous system. Specialist nerve cells in the brain and spinal cord degenerate to the point that a sufferer may find it increasingly difficult to perform daily activities and even become bedridden.
“I think it is important that ALS caregivers are aware that this option of developing a custom-designed tracheostomy tube is available as it could save other patients’ lives. While motor neuron disease is considered relatively rare, I come into contact with a number of sufferers and their families from around the world,” Bernice concluded.
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