by Jane St. Clair
If your heart breaks easily, you don’t need to read this thing.
In February 2010, Joseph and Sandra Maraachli became the parents of a baby boy they named Joseph.
Just having another baby was an act of faith for them. Eight years earlier, they lost a daughter to a rare genetic condition called Leigh’s Syndrome. With this terrible disease, a baby is fine until she is about three months old or so, and then she develops symptoms of a failing nervous system, such as loss of motor skills, seizures, and impaired breathing. The Maraachili’s little girl lived to be only 18 months old. Their second child, a seven-year-old, is fine.
At first Baby Joseph seemed fine too. And then the family’s tragic history repeated itself. As Baby Joseph struggled to breathe, the long nightmare began again.
The Maraachli’s knew how they wanted to handle things, having been through it once before. They were accepting that Joseph was not going to live long, but they wanted to take him home to die. Doctors had performed a tracheotomy on their first child so she could breathe, and she lived another six months at home with her parents. She was not stuck in some impersonal hospital bed with her tiny body filled with tubes and medicines, and she died in her parents’ arms.
The Maraachi’s wanted a tracheotomy for Joseph and they wanted to take him home.
Now it’s not as if a tracheotomy is a big major deal. It only costs about $1000, cheap as surgeries go. It’s a very old, familiar surgery, dating back to 3500 BC. Alexander the Great used his sword to perform a tracheotomy on one of his soldiers. You can do it yourself in an emergency with a razor and a straw. You open the throat, insert a tube, and that’s it.
Yet Baby Joseph’s doctors refused to do a tracheotomy. They worried he could die from the procedure, which meant they were taking a position that made no logical sense. They also said Baby Joseph was already in a vegetative state, his situation was hopeless, and under Canadian rules, that means you do not do surgery.
In any kind of humane world, where parents in a desperate situation have rights and emotions and others are kind to them, Baby Joseph’s parents would have the final say in what happened to their child. They were not, after all, asking for a miracle. They were only asking for a tracheotomy. They appealed to the Consent and Capacity Board of Ontario to overrule their doctors. On January 26, the board said no. After a Superior Court judge in Ontario refused to change that ruling, Baby Joseph’s parents tried to take him to Children’s Hospital of Michigan in the USA. On February 24, that hospital refused to admit him.
Baby Joseph was only a few hours away from being pulled off life support against his parents’ wishes when the national director of Priests for Life helped the family by arranging and paying for a trip to the United States. On March 21, Baby Joseph got his tracheotomy at the Cardinal Glennon Children’s Medical Center in St. Louis, Missouri. Now he could breathe on his own. Now his parents could take him home.
Baby Joseph is still at home with his mother, father and big sister. His prognosis is still the same, but he is alert, he recognizes his parents, and he even throws an occasional tantrum like any other 15 month-old. He is more comfortable and on much less medication than he was at the hospital and, as a family friend says, “he’s doing phenomenally.” Despite everything that happened, and despite their personal ordeal and tragedies, the Maarachlis are not bitter. They have the grace to be thankful to others.
“So many people from … all around the world have reached out, sent letters and called my family to let us know they were praying for us and thinking about us,” Baby Joseph’s dad told CBS-News. “This has really helped us. There is just so much kindness in the world.”
As Anne Frank wrote in her diary in 1939, despite everything, we have to believe that people are good at heart.
May God bless Baby Joseph and the family that loves him.
“Baby Joseph gets second chance at life in the U.S.,” Fox News, March 14, 2011, see http://www.foxnews.com/us/2011/03/13/baby-joseph-gets-second-chance-life/
Ertelt, Steven. “U.S. Hospital Rejects Baby Joseph,” Life News, February 24, 2011.
“Euthanasia Prevention Coalition seeks Intervener Status,” The Interim, June 30, 2011.
Katz, Neil. “Who has the right to tell Baby Joseph to die?” CBS News, April 22, 2011, http://www.cbsnews.com/8301-504763_162-20056434-10391704.html?tag=mncol;lst;2
Millette, Rebecca. “Ontario Appeals Court rules doctors don’t have right to remove life support,” Lifesite News, June 29, 2011.
Rice, Sabriya. “Baby Joseph returns to Canada breathing on his own,” CNN News, April 21, 2011, see http://www.cnn.com/2011/HEALTH/04/21/baby.joseph.goes.home/index.html.
Sher, Jonathan. “Court sides with Patient’s King,” The London Free Press, June 2, 2011.
Another Canadian case involving a family’s right to make its own end-of-death decisions about loved ones is now going through the Canadian courts. If you believe that euthanasia is wrong, please contribute to the legal defense fund of the Rasouli family through the Euthanasia Prevention Coalition at http://www.euthanasiaprevention.on.ca/Donations.htm