In-Home Support Lacking for Parents of Sick Children

It’s all over the news that a Massachusetts woman has been charged with attempted murder, child endangerment and assault and battery for withholding cancer treatment from her son who also suffered from autism. She admitted that she did not give him in-home chemotherapy prescriptions for five months because the side effects made her son so sick, she was afraid he couldn’t withstand them. His cancer, once in remission, returned and he died of lymphoma at the age 9 in 2009.

Certainly, this story is an unspeakable tragedy by any measure, but rather than address the woman’s guilt or innocence, I want to speak to the underlying issues. This woman was a broke, single mother with little or no support from the boy’s father and took care of her son alone. Those of us with children on the autism spectrum know what a daunting and exhausting task raising our child is. Now add the dimension of that child having a separate, life threatening disease.

From personal experience, I know that even the most prestigious hospitals can lack special protocols for children with autism, making their stay much more stressful than it needs to be.

Late the second night after my child was admitted into a hospital, they moved him without warning to another floor. He became hysterical and
there was no one there to be with him. The next morning, I walked into what I thought was his room only to find it stripped bare of everything, beds and equipment included. I went into shock thinking he had died in the night. This was just the kick off to six weeks of such horrific surprises and mistakes.

Then once a child is released from the hospital, a parent is expected to become a full time nurse, charged with monitoring IV machines, stomach pumps, copious amounts of medication and whatever else it is that goes home with him or her.

What doesn’t go home with you is help and support. Already pushed beyond the human limits of endurance by a lengthy and harrowing hospitalization, parents are tasked with being their child’s medical caregiver, then held accountable should something go awry.

This is a very serious problem and endemic at our children’s hospitals. Public health nurses and respite care should be made available to the parents of seriously ill children after they leave the hospital, especially single mothers without the support of an extended family. Community support is generous for these institutions and special funds should be allocated to assist parents once their children leave the hospital proper.

The woman in this tragic story needed other hands to help with her son. She needed to sit in a cafe and drink coffee or go for a walk. She needed to be part of his home medical team, not the whole show. Someone should’ve had her back.