Posted on 03/10/2011 8:28:08 AM PST by wagglebee
First, kudos to Windsor Star reporter Sonja Puzic for her accurate and sensitive work on keeping Windsorites up-to-date on this heartbreaking story of Baby Joseph Maraachli and his parents.
Thanks as well to Anne Jarvis for her insightful column looking carefully at both sides of a highly controversial issue in the March 4 edition of our newspaper.
It is obvious through media pictures and reporting that little Joseph has had exemplary care given by highly qualified professionals (doctors, nurses, respiratory therapists, etc.) in Children's Hospital at London Health Sciences Centre. He appears well nourished, provided with breathing support by ventilator and surrounded by love.
The central issue surrounding the baby's care is the parents desire to bring their baby son back home to die. Media reports have indicated that the parents believe that a tracheotomy would support their infant son's breathing.
This is a surgical procedure that opens the throat into the trachea (breathing tube). A device called a cannula is secured in place to ensure an opening for breathing.
However it does not ensure that normal, spontaneous breathing will occur.
Moe, the baby's father, told me: "Our first child (with the same neurodegenerative disorder) had a tracheotomy and we took care of her at home."
He also stated: "We managed this tracheotomy without a problem or infection for six months prior to her death."
They also were able to suction and maintain the cleanliness of the tubing. Their baby girl died quietly in their arms. They want the same for their infant son.
Unlike their daughter's situation, Baby Joseph's appears more difficult. His breathing has been maintained on a ventilator since October 2010. According to standard procedure, the hospital indicates that attempts at "weaning" Joseph off the ventilator have been made, but were unsuccessful.
This could be due to degen-erative damage to the breathing centre of the brain, a loss of muscle support in the chest wall and/or other complications.
Unfortunately, the baby needs support to breathe by the use of mechanical ventilation. It is highly unlikely that little Joseph could breathe on his own 24 hours a day. Therefore a ventilator is needed whether or not a tracheotomy is done. Having a tracheotomy in place may not keep Baby Joseph breathing on his own.
It would seem to me that undergoing a tracheotomy at this time, would be an additional trauma and burden for Baby Joseph. Experts in the field of ventilatory assistance have provided feedback regarding the tremendous difficulties in attempting to remove longterm ventilation for infants and adults, depending on the underlying disease.
In efforts to bring Baby Joseph home, there have been concerned professionals who have made themselves available to the parents. One item not reported is the existence of two infant, portable respirators for Joseph's use.
Instructions for the parents on how to care for the baby on the portable ventilator would be provided and followed. This would allow the infant to have his breathing supported at home.
At this point, Children's Hospital could bring the infant home with a doctor and nurse present as they have suggested. Baby Joseph could then be switched to the portable ventilator and mom and dad could have their son at home.
Fifty-four years ago, my first son was born with a congenital abnormality that was considered inoperable. Thomas Andrew came home to die. Yes there was agony, but the comfort to me then and even now after all these years, is that he died at home surrounded and supported by a loving, extended family.
So, I hear the heartfelt cries of these grief-struck parents.
As a community, we should be doing everything in our power to acknowledge the plight of Baby Joseph and his family. Let's try to bring him home where he can die with dignity, in the arms of his family.
We would have to recognize and support the multitude of difficulties that his care would entail.
There are answers. The citizens of Windsor always seem to have them when it comes to caring for their own.
Jean Echlin lives in Windsor and is an independent nurse consultant in palliative care and gerontology.
Perfectly stated!
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I did misread this, tioga. My apologies.
My fervent prayer that Joseph be able to go home to be in the arms of his loving parents ... if and when he is called Home.
I am heartened to read this article.....at least all of Canada has not gone mad with baby killing. To get Baby Joseph home to the comfort of his family for whatever time he has is the only humane answer. I pray this happens soon.
Thanks to Jean Echlin in Windsor!
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