Hydrocephalus, Spina Bifida and Medical Killing – Current News from DRI and a History Supplement from Me

Yesterday, someone forwarded me the latest mailing from Disability Rights International (DRI), this particular one came in the form of a message from the organization’s president, Laurie Ahern.  The shortest explanation of the organization’s mission can be found in its mission statement on the “about” page of their site: “Disability Rights International is dedicated to promoting the human rights and full participation in society of people with disabilities worldwide.”  There is, of course, a lot more to know and learn about the organization than that and I encourage people to explore DRI’s site at the links provided above.


The message from Laurie Ahern regarded, in part, the baby boy seen in the picture below.

The picture above is of a 6 month old boy lying in a crib whose head recently burst due to untreated hydrocephalus. Doctors expect the boy to die “anytime.”

source: http://ih.constantcontact.com/fs031/1101730023584/img/50.jpg

The following message can be found on the main page of DRI right now, but main page items tend to get moved off the page after a few weeks or months.  This alternative link looks like it might be permanent.

Excerpt:

Dear DRI Supporters, Several weeks ago, I visited a baby house in Eastern Europe. It houses about 130 infants and small children, a third of whom are children with disabilities. Most babies are eventually returned to their birth parents, put into foster care or are adopted. But not the babies with disabilities. They have nowhere to go. Among children with disabilities, almost 30% died last year. I walked with trepidation into each dark room. In the middle of the day, not a sound. Not one child crying. They learn quickly that no one comes. One room after another, children with disabilities lay dying. Hydrocephalus and spina bifida are left untreated, despite the fact that the country has the means to care for these conditions. I was told that doctors will not perform surgery on children with disabilities who “have no future.” And many die from lack of touch and love, despite adequate food and heat. One six month old baby with hydrocephalus still haunts my dreams. The condition (caused by a buildup of spinal fluid in the head) can easily be corrected by the insertion of a shunt. But instead, this little boy had a “burst” -his head blew a hole from the pressure. He lay in his crib dying an agonizing death.

 The rest of the message describes the situation in other locations and the efforts that DRI is undertaking to end this large-scale abandonment and extermination of children with disabilities.  Repeating myself, it’s worth your time to read the rest of the message and consider adding DRI to your list of organizations to consider supporting with a contribution.

I want to caution people – specifically and especially my fellow Americans – that we shouldn’t feel any sense of moral superiority here.  The picture of the child with hydrocephalus who was abandoned and left untreated to die happened all too often in the United States, although no one can be certain how many children died that way.

One notorious example involved a “study” at Oklahoma’s Children’s Hospital a little over three decades ago.  Here’s a link and an excerpt to a blog entry on my personal site that reproduced the 1994 article “It Can Happen Here.”

It Can Happen Here
by John R. Woodward

American doctors once conducted an experiment that proved you can kill the disabled babies of poor families and get away with it. Their research was funded by the Federal Government. Twenty-four babies with spina bifida lost their lives.

The experiment was declared a success. Yes, it can happen here.

Between 1977 and 1982, four doctors and a social worker at the Children’s Hospital of Oklahoma, in Oklahoma City, monitored the births of babies with myelomeningocele (the medical term for spina bifida). Parents who were poor were told that it would not be appropriate to treat their baby and given an extremely pessimistic picture of their child’s future life. Parents from better-off families were told more about the treatments for spina bifida and given more optimistic – and more accurate – information about their child’s potential.

None of the parents knew they were part of an experiment. Parents who were assigned to the “pessimistic outcome” group chose, by a factor of nearly five to one, not to have their babies treated. The experiment was not conducted to prove that babies with spina bifida will die if they are not treated. Doctors already knew that. The goal of the experiment was to prove that the families would accept a “do-not-treat” recommendation from their doctors.

 As far as we know babies with spina bifida and hydrocephalus die through withholding of treatment in the US, although it’s probable that withholding of nutrition and hydration coupled with pain relief shorten the dying period and decrease the suffering for the infants.

And, of course, in the Netherlands, they moved on several years ago to the outright killing of infants with spina bifida and hydrocephalus.  The fact that medical professionals in the US and the Netherlands have made ending the lives of infants with disabilities more efficient and freer of discomfort is a rather shaky claim to the high moral ground.

So let’s all remember as we agree that outrage is legitimate over the treatment of infants with disabilities in Eastern Europe, the United States and other “progressive” countries really don’t have a high moral horse to sit on.  –Stephen Drake, born 56 years ago today; a survivor of hydrocephalus and a “do not treat” recommendation.  (and three shunt operations)