Friday, June 2, 2017

What's best for the children?

Last year, I first read the disheartening story of Mariah Walton, a young woman from a Mormon family in Idaho.  Ms. Walton had the misfortune of being born with a hole in her heart that could have been easily treated when she was a baby.  Unfortunately, her parents were religious wingnuts and refused to seek appropriate medical care for her.  Rather than having the hole corrected surgically, they chose to pray over Mariah and treat her with essential oils.

Now, at 21 years of age, Mariah should be enjoying robust health and good times.  Instead, she fights for every breath and needs oxygen.  She's permanently disabled and may need a heart and lung transplant.

I have read accounts written by people who have had organ transplants.  Although they can be lifesaving and miraculous in many cases, having an organ transplant is very risky and, in fact, doesn't guarantee good health.  Some years ago, I read Amy Silverstein's book, Sick Girl.  Although the book may seem to have a bitter tone and some readers might think Silverstein is shamefully ungrateful, she does explain why an organ transplant basically amounts to trading one major health problem for another.  Yes, you get a heart or kidney or lung that works better than what you had.  But you have to take drugs that lower your resistance to every germ out there so your body doesn't reject the foreign part.  There is a greater risk of developing cancer, too.

Now, in fairness to the Church of Jesus Christ of Latter-day Saints, I am not aware of any church teaching that stipulates seeking healing from the Lord instead of medical interventions.  In fact, from what I read, Mariah's parents' beliefs seem to be on the fringe of what regular Mormons believe.  Still, Mariah and her family live in Idaho, where apparently, it's okay for a parent to forego appropriate medical care for their children in favor of "faith healing".  The same is apparently not true in heavily Mormon Utah, where young Parker Jensen, who suffered from Ewing's sarcoma, was forced into medical treatment even after his parents tried to prevent it.

I'm actually kind of on the fence about this, though.  Over the years, I've followed cases of parents who have tried to make other choices for their children who have health problems.  I remember the case of Starchild Abraham Wolf Cherrix, a fellow Virginian, who had Hodgkin's disease when he was a teenager and was fighting Virginia medical officials who wanted to force chemotherapy on him.  "Wolf" is still evidently battling cancer, though he is now a young adult.  His case inspired Virginia's "Abraham's Law", which allows parents of teenagers to refuse medical treatment or choose alternative treatment for their children.  The catch is, the teen has to "seem" mature, both parents and the child have to agree, and all must agree that the choice is in the child's best interest.

I also remember the Minnesota case of Daniel Hauser, who in May 2009, was 13 years old and also had Hodgkin's disease.  His mother, who belonged to the Nemenhah Band of natural healers, fled Minnesota with him when doctors tried to force Hauser into treatment.  He did eventually come back and accept treatment, which evidently cured his cancer.

In these two cases, the minors were not young children.  Cherrix was 17 years old and could form cogent opinions about his situation.  Hauser was 13, and apparently not as knowledgable about the disease as Cherrix was.  In Mariah Walton's case, she was just a baby when the issue was discovered. It could have been fixed then and there.  Instead, her parents were allowed to medically neglect her and she is now paying the price as an adult.  Had the Waltons been living in neighboring Oregon, the parents could have been in legal trouble for not seeking appropriate medical care for their daughter.

It's interesting how the laws in the United States differ depending on what state you live in.  Justina Pelletier was forced to stay in a hospital and spent 16 months in state custody because medical officials disagreed with her parents' decision to seek treatment for her mitochondrial disease.  Her case was especially interesting, since Pelletier is from Connecticut, but had been taken to Boston Children's Hospital for emergency treatment in 2013.  Boston Children's Hospital is in Massachusetts, so Pelletier wasn't even being detained in her own state.

Officials at the hospital determined that Pelletier's problems were caused by psychiatric issues and her parents were trying to force her into "unnecessary" medical treatments.  Pelletier's parents had previously taken her to Tufts Medical Center, also in Massachusetts, where doctors had diagnosed her with mitochondrial disease, a rare genetic disorder that affects how cells produce energy.  Evidently, the people at Boston Children's Hospital disagreed and felt that was grounds for the state to pursue custody of the young woman.  Pelletier spent months in a locked psychiatric ward.  Now her parents are suing.

I do think that there should be some way to make sure that parents aren't allowed to impose wacky religious beliefs on their innocent and helpless sick children.  On the other hand, I also think that there's a fine line in ensuring what is best for the children and the government overstepping its boundaries.  It really is a shame that Mariah Walton is suffering because her parents neglected her.  She should be strong and healthy, enjoying her life instead of struggling to breathe.  It seems our lawmakers need to come up with a happy medium that considers the rights and interests of everyone involved.

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