10 June, 2005

Ichthyosis

Someone I don't even know sent me the following link. It's a webpage about congenital (Harlequin) ichthyosis.

Congenital ichthyosis, also called harlequin fetus, is a lethal autosomal recessive disorder resulting from a keratinising disorder. An externally thickened keratin layer of skin and diffuse plate like scales characterizes it...This condition can be shocking to parents. So it is better that the fetus is diagnosed early.

Shocking is quite an understatement. Look for yourself, if you dare. I warn you, it's very disturbing. The "Congratulations" on the hospital video is the saddest of ironies. Just as Mother Nature can create some of the most beautiful scenes and creatures, she can be a cruel bitch too.

I don't mean to present this as a sort of freak show, as a casual glimpse of the grotesque. After the initial shock of seeing the images wore off, I thought about that scene in the V mini-series where that woman gave birth to the lizard baby. Then I began to think about the sheer horror of the parents. If, as the doctor says, it's better that the fetus is diagnosed early and you detect it, then what? According to the article, the longest a child with a definitive case of this ichthyosis lived was 3 years. I immediately thought about Peter Singer's case for euthanasia under some circumstances. Here's a description of a child with this disorder:

At birth the affected infant has a characteristic appearance of thick, whitish, armor-like skin, criss-crossed by deep red grooves often producing diamond-shaped forms resembling a harlequin costume. Facial anomalies include bilateral ectropion (complete eversion of the eyelids with occlusion of the eyes), eclabion (eversion of the lips), absence of external ears and nasal hypoplasia. The limbs are short and contained in a rigid sheath with hypoplastic fingers, toes and nails. Globally, the newborn appears to be encased in a tight, parchment-like membrane, which allows little movement and holds the limbs in a semi flexed position. The mouth remains permanently open and the infant is unable to suckle properly.

How could someone deny a woman an abortion if it was determined that the fetus was afflicted with this disorder? What kind of life could the infant possibly have if brought to term? I'm with Singer here. This Christian bullshit about us all being God's creatures because we have souls has got to go. Zygotes and embryonic stem cells do not have souls. They are not people. Some people's lives are so miserable that they ought to be ended. Especially if they themselves desire it.

2 comments:

Christina Dunigan said...

I was confused at first because I had a college friend with ichthyosis. I didn't know how many different types of ichthyosis there are.

I'm moved to great pity for the parents of the affected children, and that poor baby. But I can't see abortion as an acceptable solution. It assumes that the child's life has no meaning. And it precludes the possiblity of there ever being hope for these children. You can't find treatments or cures for ailments if you kill all the patients as soon as they're diagnosed.

However horrifying the child's condition, he or she deserves all the love we can pour out, and the chance to live out whatever time is allotted. At this stage of medical knowledge, clearly all that can be offered is comfort care. But perhaps there are new treatments on the horizon.

I want to learn more about this disease. Two of my students want to become pediatric physicians who work on new treatments for currently untreatable diseases. God willing this will be one of the cruel syndromes they conquor.

Skip said...

I guess I'd rather not grant the authority to the government to say that a woman must see a pregnancy to term against her wishes if the child is horribly malformed just for science. Please don't overstate the case. I did not say that these children must be aborted, I merely propose that a woman should have the option.

Sorry GG, hoping for the intervention of the fairy tale deity who, in your world, allowed this to happen in the first place, won't do squat.