Friday, November 29, 2013

Does a Baby With Brain Damage Have Value?

Though He slay me, yet will I trust Him...
~ Job 13:15, NKJV ~ 

"Parents Ignore Doctor's Advice to Abort Brain Damaged Baby, Delivers Healthy Girl," so the viral headline of this week reads.  Posted in a variety of venues, the story of Liane and Iain Stooke of the UK was revealed 2 years after the birth of their daughter, Miley.  Frenchay Hospital in Bristol had apparently told them after an ultrasound that their baby had holoprosencephaly, a rare disorder in which the front part of the brain fails to divide into two hemispheres, causing severe damage, seizures, and a very limited lifespan.  The hospital had encouraged, and by some accounts even pressured, the Stookes to abort the baby.  Holding onto hope, the couple refused to abort, and gave birth to a daughter who was "completely healthy."  Their daughter did not have holoprosecephaly.

The original story in the UK Daily Mail states, "Mrs Stooke said: ‘Miley's just perfect. I'm just so glad I trusted my mother's instinct and gave my girl the chance to live.’"  While I praise God that these parents chose life for their child, there is also much I find troubling about this story.  Most of my disturbance with this story lays around the question, What if Miley did have holoprosencephaly at birth?  Would the Stookes still be considered wise parents?  Would the story be getting all this coverage?

Much of the unspoken story lays underneath the surface, posing the question, Does a baby with brain damage have value?  The headline seems to imply that one shouldn't abort a baby because you may be killing a "perfectly healthy" child.  That lingering sense that abortion would have been a suitable choice if little Miley had had holoprosencephaly asserts itself behind the headline.
Since giving birth to a child that some, like Peter Singer, would consider "imperfect" or unworthy of life, I have developed a keen spiritual awareness where bioethics are concerned.  My internal "radar" is highly attuned to articles and stories regarding matters of life, especially those involving those with special needs.  I sense that God is calling me to be a voice in the depraved wilderness of today's culture, affirming the value of these individuals.
With that in mind, I would have to shout from the mountain tops, OF COURSE, a baby with brain damage has value!  And that value is ascribed to each and every human being, no matter the physical or mental ability level, by the Creator of that life.  Because God gives each of us immense and immeasurable value (After all, Jesus gave his life for every one of us), we then ought to hold one another in equal esteem.  If Miley Stookes had been born with the holoprosencephaly that was predicted, she would have no less worth in the eyes of her Creator than she does now as a "completely healthy" child.

Secondarily, every person, no matter what their cognitive or physical ability, has incredible value because of how they affect the remainder of the world.  We are transformed and made better people for having been around those with special needs.  Those with disabilities have a way of exposing the typical world's deficits and challenging us to face our own ugliness.

I always laugh at the notion that God only gives special kids to special parents.  In reality, God doesn't call the equipped, He equips the called.  Both my husband and I are far less selfish, more compassionate, more longsuffering for having been the parents of kids with special diagnoses.  Our perspective is greater, with an eternal vision and value for things that money can't buy.  We would live much more on the surface had we not been given the gift of special needs challenges to draw us deeper.

One doesn't need to be the parent or family member of one with a disability, however, to experience the personal transformation that comes from spending time with the uniquely-abled.  Our culture as a whole would suffer greatly if you just removed some of the more famous individuals with a diff-ability.  I think of every adult friend we have with a diagnosis and shudder at the thought of all the wisdom, humor and love we would miss without them.  I also live in awe of the voice being drawn out of the voiceless through things like speaking boards or innovative therapies like Rapid Prompting Method (RPM).  Through these advances, we find that even those we once thought of as "a vegetable" really have a person with independent thinking locked up inside of them.  And even those who have the care worker wiping drool from their mouth as they sit painfully twisted in a power chair make the world around them a better place by their mere existence.  How worthy all of these individuals are of being treated with esteem and respect!

Yes, it is good that the story of Miley Stooke came to the fore, but that is not where the story should end.  No matter what God lays at our feet, "Though He slay me," though He ask us to walk the path of raising a child with special needs, we need to trust in His love for each and every life.  The Lord calls us each to proclaim to an unbelieving, hopeless world, that love and hope He alone gives.  This makes a baby born with brain damage immeasurably valuable, no matter how difficult the journey.

PRAY:  Father, when the rest of the world would so easily dispose of those who are differently-abled, grant me the courage and the voice to proclaim Your truth.  Open the world's eyes to the value of each and every life You create.  May our culture repent of the sins of murdering the least of Your children, and treating them with anything less than Your love and compassion.

For further reading & meditation:  Psalm 139:13-16

~Barb Dittrich
Photo Image Courtesy of: FreeDigitalPhotos.net

2 comments:

  1. Amen! 11, almost 12 years ago, I was told to let go of my son, as he wasn't supposed to survive his 28 week delivery. He had multi-organ failure, near total lack of oxygen, was in distress, etc. Years later, we see the effects of the damage the lack of oxygen did to him, but he's still special and I love him more than he'll ever know. Tho the days with him are hard sometimes, I wouldn't trade him for a "normal" child.

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    1. Thanks for sharing your story, Angie! You too, like me, are called to keep telling the world how much kids like ours have value.

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