Can-Do-Ability: Answers and Solutions from my personal experiences of living with a disability

Hospital Refuses To Save Baby Joseph

23 Mar 2011For the parents of 1 year old baby Joseph Maraachli, there will heartbreaking times ahead of them.

Their second born son, Joseph, has Leigh syndrome, an extremely rare, hereditary neurological disorder that attacks the brain, spinal cord and optic nerve. The Maraachli's daughter had the same disorder and died at 18 months old, over eight years ago.

The family lives in Ontario, Canada where Joseph was being cared for in a local hospital there, called London Health Sciences Centre.

Doctors at the Ontario hospital claimed that Joseph was in a vegetative state and there was nothing more that could be done for him to live, and urged the family to consent to having Joseph's ventilator turned off. Without the ventilator, Joseph would die from suffocation.

Joseph's parents believed he still had some neurological awareness and fought the hospitals decision in court, but lost. They didn't want their child to die in the cold surroundings of an intensive care unit in a hospital.

The family were aware that Joseph's life would not improve, but they wanted him to undergo surgery to insert a tracheotomy tube into his throat, which would help him breathe unassisted, more comfortably and in the comfort of his own home, surrounded by his family.

They were still being asked to give consent for Joseph's ventilator to be turned off, which would ultimately result in his death.

The family enlisted the help of a pro-life group from the US, based in New York, called Priests for Life. The group managed to raise enough funds to pay for Joseph's care in a US hospital, where he would receive surgery to insert a tracheotomy tube.

A spokesperson from the St. Louis hospital, where Joseph is now being treated, said in a press release, "It is our hope that this procedure will allow Joseph and his family the gift of a few more months together and that Joseph may be more comfortable with a permanent tracheotomy".

This brings up many issues surrounding terminal illness and disease. What would you do if this were your child? Would you want them to die quickly? Or would you want to prolong their life and allow them to die slower, but more comfortably?

It's a very touchy subject that brings out many different opinions in people. We allow our animals to be ‘put to sleep' humanely, and would be frowned upon if we were to let our pets live through illness for our own selfish needs, yet we find it acceptable to watch a family member slowly suffer from a terminal illness, such as cancer. Where do you draw the line? I'd love to hear some general thoughts on this topic...

Joseph with his dad Moe

Joseph with his mother Sana

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