Harlequin Ichthyosis and the Justice of God

Harlequin ichthyosis and the Justice of God

By Joel McDurmon


WARNING: before you google “harlequin ichthyosis” you need to know that this skin disorder which affects newborns is extremely graphic and stomach-turning. It will make you weep and possibly get sick. So proceed to Wikipedia or a medical dictionary if you will, but BE FOREWARNED.

I have reported on the poor quality of response from atheists concerning the little video AV produced and I placed on YouTube. I do not intend here merely to get more mileage out of the ever flattening tire of “atheism.” I have long since learned to ignore 99.99% of responses as I find little ever original or worthy of comment. This changed Tuesday morning when one commenter gave me a new spin on an old argument. He pointed out a particularly repulsive and graphic disorder that affects newborns. This he did to exclaim the classic problem of evil. The writer charged me:

Why don’t you try looking up harlequin ichthyosis on a Google image search, and then holding on to your faith. It killed mine, stone dead, because if there’s a disorder like that, that does that to innocent newly born babies, any God that exists is neither kind nor loving. There’s no theological argument to counter that. I’ve looked for it, and failed. Sorry.

WARNING: before you google “harlequin ichthyosis,” and certainly before you image search it, you need to know that this skin disorder which affects newborns is extremely graphic and stomach-turning. It will make you weep and possibly get sick. So proceed to Wikipedia or your medical dictionary if you will, but BE FOREWARNED.

I admit I was not prepared for what I saw. There is no doubt that Harlequin ichthyosis (hereafter H.i.) is a horrible, tragic, lamentable genetic condition. That it affects helpless newborn infants who rarely survive more than weeks is all the worse (though some do survive into adolescence). One aspect to be thankful for is that the condition is rare (1 in 300,000 births). Only about 100 cases have been reported since it was first described in 1750. Since it is purely a genetic condition it depends highly upon the rare chance of a rare individual connecting with another rare individual. A British study says that the right two people meeting would involve a 1–in–250,000 chance, and even then only 25% of cases would result in the genetic defect. This analysis creates a 1–in–1,000,000 chance for any given birth to suffer the disease.

For those of you who spared yourselves from the pictures, the disorder’s name is descriptive. The Latin medical name Harlequin refers to a pre-modern Italian and French theater character “Arlecchino” who wore clothing made of multiple diamond-shaped patches. The name is used in nature to describe birds and animals that have variable patches of coloring. In the case of this disorder it was meant to describe the various segmented patches of skin which result. Ichtyosis comes from the Greek word for “fish” and refers rather crudely to a scaliness of skin that to early taxonomists resembled that of a fish. The defect occurs in infants and causes the skin to form in thick scaly armor-like patches. The entire body is affected with scores of cracks where normal skin bends. This leaves open wounds perpetually vulnerable to infection. The eyes, ears, nose and mouth are deformed, contracted, and separated from the skin. Breathing is impaired by the tightness of the skin. The infant usually dies of infection, respiratory problems, or dehydration.

The writer, named “tidalwave1978,” has thus challenged us to look at this truly pitiful and shocking reality while yet “holding on to” my faith. “It killed mine,” he says. The classic argument is added: No loving God would let that happen, and thus, since it does happen, no loving God exists. While I do not have the time tight now to write a detailed theodicy (not that a good theodicy is so complicated as to require being “detailed”), a response is in order. Despite the shocking and specific nature of this particular case, the Bible stands ready and surprisingly relevant to the graphic nature of the issue.

Let me first say very clearly that I do not treat this as a trivial matter of scoring debate points. The intellectual “argument” aspect of this pales in comparison to the reality of sin and suffering. I do not write about it for its shock value or for anything other than its true weight. Nor is this a convenient or easy thing to write about. I consider the problem of evil among the most powerful of the atheist’s arguments, and when it is presented in the these stark terms—the abject suffering of babies—it has its most powerful emotional draw. But it is not just emotional, it is real. The problem of evil is powerful and real because evil is powerful and real.

“Ugly” topics like this bring our faith into the toughest trenches of human life, but they also force faith to be real. Too often we sit comfortably in suburban churches with images of pop-star Jesus, or rosy-cheeked Jesus, or sheep-toting distant gaze Jesus as the norms for religious meaning. Yes, of course, comfort and peace are important parts of the message (who can neglect the 23rd Psalm?), but being partakers of suffering and of the cross are prominent and consistent ideas throughout the New Testament.

Suffering at its most irrational and unimaginable level separates the faithful from the unbeliever. It is not suffering in general that does this, but pointed suffering which we cannot help. The average cultural or casual (nominal) believer will continue to believe in God through a headache, or at least as long as we can take aspirin. Likewise for the many pains and evils we can tolerate or ameliorate. Yet the faithful will tolerate even tremendous suffering: if it is not alleviated they will praise God for bringing them through the suffering; if it is cured they will praise God for healing and deliverance. Either way, the suffering refines and strengthens their faith.

But there is yet a type of suffering which boggles the mind, for not only is it not comprehensible why such things happen, but they are so counter to our notions of God that we cannot seem rationalize their existence in any way shape or form. In these cases, human intuition and conventional logic utterly fail. Babies? Children? What when newborns are subject not only to death but to hideous malformation? What when little girls are kidnapped and raped (the scenario Sam Harris poses in Letter to a Christian Nation)? What of the suffering of the helpless and the never-to-be-helped? This is the ultimate battle line for faith.

In the midst of these horrors, especially this particular skin disease, the Bible reader cannot help but recall the plight of Job. Having done nothing to displease God—in fact, Job was “perfect and upright” (Job 1:1)—Job was subjected to the loss of everything good, and subjected to perhaps the most hideous form of skin disorder of the time. His malady was so severe that he sat down and scraped off his infected skin with a shard of pottery (Job 2:8). At that point—in the lowest moment of his rejection—Job’s wife treated him with the same challenge that my critic brings to me: “Do you still hold fast your integrity? Curse God and die!” Can you witness or suffer the harshest of fates and yet remain “holding on to your faith”? Or should you then immediately deny God? Job’s response provides a directive: “Shall we indeed accept good from God and not accept adversity?” “Adversity” here is a euphemism; few have ever suffered like Job. Yet he retained his faith throughout. Even in the end of the book, when all of us readers are awaiting the grand explanation from God—why?, How can a good God let these things happen?—the type of answer we want is not forthcoming. Instead, God’s apologetic was the two-fold blessing of Job who had endured his suffering in faith. Covenant faithfulness is God’s self-theodicy.

In New Testament terms, God’s covenant faithfulness is shown on the cross. He Himself endured the cruelest degree of torture, and is therefore acquainted with the worst of our conditions. He entered humanity as a man, and willingly subjected himself to the scourge, torment and pain of human life. This he did to indentify fully with us as He went on to be a whipped, beaten, lacerated sin offering in our stead and on our behalf.

In the light of this H.i. issue, it is worth recalling the prophecies of Isaiah 53 and Psalm 22—those that graphically describe the physical suffering of the Messiah. The pictures I saw reveal babies suffering from severe physical deformity, lacerations of the skin and deformity of the face and extremities. There is no way to adequately respond to this with the words of an article, but God’s word reveals a suffering Messiah who was subjected to just as awful and excruciating pain, only inflicted by his fellow men: “His visage was so marred more than any man, and his form more than the sons of men. . . . We hid as it were our faces from him” (Is. 52:14, 53:3). The Psalm adds to the description:

I am poured out like water, and all my bones are out of joint: my heart is like wax; it is melted in the midst of my bowels. My strength is dried up like a potsherd; and my tongue cleaveth to my jaws; and thou hast brought me into the dust of death. For dogs have compassed me: the assembly of the wicked have inclosed me: they pierced my hands and my feet. I may tell all my bones: they look and stare upon me (Ps. 22:14–17).

But this was not senseless suffering. It was redemptive: “Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed” (Is. 53:4–5).

This was God’s plan: to destroy suffering from the inside out. To overcome and vanquish suffering by suffering ultimately. This is God’s justice: that he took the most vile and extreme of punishments on his own back. He did it. No one else would have or could have.

For those who come bearing the problem of evil, the Cross of Christ is the answer. There God’s wrath upon sin and His mercy toward mankind are both borne on His own back, His own hands, and in His own strength. God has apparently let evil exist for the sole purpose of revealing the depths of His compassion for mankind, His ability to overcome, and His intent to redeem humanity to something more glorious than it was before. The faithful—who are not “holding on” so much as they are being held—stand true in the face of suffering, in the midst of suffering, and through the end of suffering. Some bolt when suffering becomes too graphic, or too inexplicable, or too uncomfortable. This is not the death of faith, but the exposure and ascendency of latent unbelief. In this way God is glorified: the faithful are tried and refined by suffering, whereas the unbeliever is scared off (1 Pet. 1:7; 4:12–13; 1 John 2:18–19). As Lubac writes, “As the same fire liquefies certain substances whilst it solidifies others, so are there some souls that pain hardens, others whom it disintegrates.”[1]

My critic introduces me to suffering, lacerated infants and taunts, “There’s no theological argument to counter that.” In a sense he is right. At this most abysmal level of human sorrow, most human pontificating and intellectual arguments falter. But this does not mean there is no answer. It is at this point that the cross makes foolishness of human wisdom. At this point, the philosopher has only two options: curse God, or believe that suffering has an ultimate purpose and is temporary. (It may be that there is technically a third option—to suspend judgment—but in the face of H.i. no one can suspend judgment.) Either no loving God exists, or God’s love is expressed in a way that we will only fully comprehend at a later time. For now, what understanding we have of God’s answer to evil is found in the suffering He Himself bore on the cross, and the Victory He Himself won in the resurrection. Here the philosopher’s speculations stall, mouths are stopped (as Job’s was; Job 40:3–5), and the critic’s conundrums become his own destruction.

So, I guess this article is indeed a little bit of a theodicy. It points to the Cross which is THE theodicy, the justice and justification of God. Only by Christ’s ultimate sacrifice are things as abjectly evil as H.i. dealt with in ultimate terms at an ultimate level. Human suffering—even the suffering of an infant—has been sympathized and subsumed in the humiliation and suffering of Christ, the Man of Sorrows acquainted with our grief. The answer to the afflicted is not only to look for escape (though relief is mercy), but for victory. Medical science is working toward this in a way: not only to alleviate symptoms but to find the ultimate physical cause of such problems and end them altogether. Genetics is a promising field in this regard. The unbeliever, however, will refuse to accept that any such progress should be punctuated with praise to God, and thus he will use medical science to curse God. The faithful will endure the suffering patiently—or at least endure it—knowing that in the end something greater than relief awaits.

There is a bit of me that begins to feel guilty when I see the pitiful state of newborns suffering from H.i. I know so many people with so many healthy children, have a couple of my own, and I feel horrible for those who must endure the sight and care of these victims. (Perhaps it is insensitive and unprofessional of me to say it like that, but that is honestly what I feel.) In my faith I know that in some way and at some time God will dissolve the evil and put things to right. For the faithful, there will be a more glorious creation birthed out of the stricken and lacerated one we see now. But it will only be brought out of the suffering and dying world that exists now.

The only way I could immediately calm my conscience from its turbulence would be to think like an atheist. Then I could possibly psych myself out enough to believe that those babies are “nothing but” random bodies of random chemicals, or whatever impersonalism I could impose on them. If the universe is at bottom chaos and darkness, I might actually accept chaos and darkness as the norm once in a while. Sights like H.i. should be expected, and the best answer would be abortion, contraception, or as the atheist Professor Peter Singer has recommended, infanticide. Escape the pain, don’t look at the pain, avoid the pain, forget the pain. In such a world, the pain of sympathy is erased by removing personhood first. Consciences are soothed by removing the soul. But then you have also erased good and evil altogether. How then can an atheist even complain about “evil”? The fact, however, that he does reveals his soul to the world.

It is easy to find a quick and easy intellectual loop to evade tough questions, but the faithful will neither want to take it, nor be forced into taking it. The faithful will endure and be refined. The case of H.i. here is the convenient cause for a quick and hasty decision to abandon faith in God. This is a mistake. It represents the abandonment of philosophy in the name of philosophy, and it reveals an intellect which is overwhelmed by the passions, a pseudo-intellectual world where revulsion and despair equal rational proof. In unbelief, grief leads to despair. When unbelief encounters irrational suffering, it reacts in rebellion against God: “curse God and die!” When faith encounters grief it experiences the same revulsion, but it reacts in hope and with work toward that hope. Christian faith “makes the great difference between hope and despair”[2]—between reform and rebellion. “Pain and suffering can always be turned to blessing when used (rather than resisted or complained about) as God’s Word directs.”[3]

[1] Henri de Lubac, Paradoxes of Faith (San Francisco, CA: Ignatius Press, 1948), 188.
[2] Jay Adams, More than Redemption: A Theology of Christian Counseling (Grand Rapids, MI: Baker Books, 1979), 155 footnote 14.
[3] Adams, More than Redemption, 159.

Article from Americanvision.org

This entry was posted in Theology/Philosophy, Worldview/Culture, Z-Uncategorized and tagged . Bookmark the permalink.

2 Responses to Harlequin Ichthyosis and the Justice of God

  1. Sara H says:


Thank you for your interest and comment.

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