NASHVILLE, Tenn. (RNS) Eric and Ruth Brown believe nothing about daughter Pearl Joy’s life is a mistake.
They say God gave Pearl her bright red hair and wide blue eyes, as well as the genetic disorder that created a cleft in her upper lip and caused her brain’s development to stall in the first weeks in the womb.
“Things didn’t go wrong,” Eric Brown said. “God has designed Pearl the way he wanted, for his glory and our good.”
I’ll admit right off that I’m not a parent, nor do I ever plan on being one, so there’s no way I’ll be able to fully understand or appreciate the kind of turmoil these people are going through with the birth of their daughter and her condition. But let’s get a brief description of this particular disorder:
Holoprosencephaly is a disorder caused by the failure of the prosencephalon (the embryonic forebrain) to sufficiently divide into the double lobes of the cerebral hemispheres. The result is a single-lobed brain structure and severe skull and facial defects. In most cases of holoprosencephaly, the malformations are so severe that babies die before birth. In less severe cases, babies are born with normal or near-normal brain development and facial deformities that may affect the eyes, nose and upper lip.
This is not a small defect, and there is no cure. The root of it lies in the brain’s failure to divide into two hemispheres, and the prognosis depends on its severity. Most babies die before birth. Some will survive, but with varying degrees of functionality. In Pearl’s case, the condition is pretty bad:
She’ll likely never walk or read or speak. Doctors have given her a year. That doesn’t matter to her parents. […] She has seizures on a daily basis, has a weakened immune system and has been back to the hospital at least five times in the past three months.
This is really where I’m stuck: why would you want to bring another living thing into this world to live out a short existence of seizures, illness, and profoundly stunted mental development? It may be an easy choice for some people to make, since the consideration is only on life and not the quality of it … but it wouldn’t be for me.
Letting go will not be easy. But the Browns say their faith tells them that death is not the end of Pearl’s life. “When she is done here on Earth, she is not done for good,” Ruth Brown said. “Heaven will be easier for her.”
I have to admit that part of me honestly hopes – however briefly – that there is a heaven, if only for her sake. It’s an understandable coping mechanism, and it would possibly be something I would find myself thinking if I were them. Eric and Ruth Brown think to themselves that no matter how much pain and suffering their daughter is going through right now, she will soon be in a place where that pain can’t find her anymore, and she will live for all eternity in the light of her maker.
As a non-believer, however … I find this story both heartbreaking and infuriating. I consider the idea of bringing a child into this world – knowing full well that she will suffer terribly and be at the mercy of a genetic defect that will kill her within the span of a year – is one of the worst exercises of parental decision making I’ve ever seen. I can’t see it as anything more than cruel and selfish on her parents’ part to subject this child to a short life of suffering and misery.
And then … to chalk this entire situation up to the will of God and say that he gave her this (relatively common) affliction for “his glory”, I just … no words. Sorry. What possible glory can come from preventing someone from forming properly in the womb and ending their life before allowing them to even be consciously aware of it happening? To say that this was done deliberately on the part of an omniscient, benevolent God as part of some kind of “plan” just makes it all the more nonsensical and pointless.