“Dum spiro, spero” (Latin - “While I breath, I hope")

I believe that there are aspects of the human spirit that influence the success of our medical
endeavors. It is something that is not well understood but always baffles the medical fraternity
when it helps a patient beat all odds. My tryst with the Muscular Dystrophy Association (MDA)
of Mauritius began with one such incidence.

It was an urgent call from the ER to the ICU in September 2008. An anxious father was
requesting all possible help for his dying son. The ER doctor was factual; the teenager was in
advanced stages of Duchenne’s Muscular Dystrophy (DMD) with severe kyphoscoliosis and
currently in respiratory distress, progressing towards respiratory arrest. He could soon just stop
breathing. He was not on any sort of medical support earlier. His chances of survival, if any,
were very slim.

The teenager’s father stood by his side, eyes filled with hope, soul tested by despair, with the
faith that there still was a last chance for his son. The teenager was a tangled body with limp
limbs, barely breathing on the stretcher, unresponsive. The disease had almost paralyzed all his
muscles, and his bent spine made breathing all the more difficult and laborious.

The teenager with DMD was in hypercarbic coma. To place him on conventional ventilation
would certainly have meant prolonged, maybe endless, hospitalization. It would not make
things easier on the family or him. Sending him home eventually, if that were ever to happen,
was going to be extremely difficult. But there was indeed a glimmer of hope at hand.

Was it really necessary to acquire a dedicated non invasive ventilator for the ICU, would it be
cost effective? The economics of medicine is a sensitive matter; any healthcare management
would have raised the same questions. If it would make a difference to even one person, it
would all be worth it; and the experience gained locally would be invaluable to our patients –
not an answer most management would readily accept. Still, I was fortunate to have
persuasively got our first dedicated Non Invasive Ventilator in our ICU in 2007, a first for private
healthcare in Mauritius. My former management would later always cherish their decision.

The teenager woke up from his coma after three hours of intense monitoring on non invasive
ventilation. The father was explained the controversial nature of the therapy on his son and the
poor chances of survival, he opted for the same over the conventional treatment. The joy on a
fathers face, after he had all but abandoned the faintest of hope, to see his son reach out for
him; and the smile on the face of a son, knowing he would spend another day in the warmth of
the love of his parents; such are the priceless moments that provided me and my ICU team the
strength to keep going when things looked bleak. For no ICU team is totally immune to their
human emotions.
That teenage boy still lives, more than 2 years since that fateful day when he battled against all
odds, surrounded by his loving family. His father, though initially skeptical of home based non-
invasive ventilation as he was never aware of it, was probably the happiest dad in the world
when he took his son home on his own non-invasive ventilator. Our ICU team’s experience with
the non-invasive ventilator and its modality of therapy was of immense help in ensuring
successful care of the teenager at the clinic and then at his home.

That fateful day opened up the link between me and MDA lead by their ever enthusiastic
president, Mr. Philip Wan. Keen to ensure that other families with children affected with DMD
did not have to face the same situation, the MDA endeavored to ensure that all their children
affected with DMD got the same chance as this teenager got. Today, 2 years from that chance
meeting, with the help of the MDA, voluntary medical and physiotherapy personnel, local
suppliers and generous grants from the sponsors, 25 children are on home-based Non Invasive
Ventilation, the largest running successful program of its kind in Mauritius. Nearly 50 children
under the MDA have bi-annual cardio-respiratory checkups. All concerned had played a vital
role in ensuring that the well established modality of home based non invasive ventilation
treatment was within the reach of all the needy children of the MDA in Mauritius. Such
programs are already prevalent in most of the developed world, and well document in medical
literature like the Eurovent Survey 1. The development of such program in Mauritius by the
MDA required them to face different and unique local challenges including financial, logistical,
social and educational issues. I am all praise for the effort of the entire team in making this
program viable, sustainable and successful.

The home based non-invasive ventilation program has not cured these children, but has
certainly made their lives that much better. Quality of life, as my professors had taught me, is
both an objective and subjective matter. For these children affected by DMD, having to live with
a machine does not seem to matter, for they are comfortable and in their homes. The parents
do not have to watch helplessly when their son struggles for a breath, there is always help at
hand at their home. They have gained some control over managing their child’s condition, and
that has brought them hope.

For it is vital for these families to have hope; knowing that for as long as their children are
breathing well, there is a chance for a miracle to help them back on their feet again, someday.

Dum spiro, spero…

Dr Sundaresan Maiyalagan MD (Anesthesiologist)

1. Patterns of home mechanical ventilation use in Europe: results from the Eurovent survey. S. J. Lloyd-Owen
et al. ERJ 2005; 25: 1025-31