When is it in a child’s best interests to die?
In a heartbreaking news story, I read of a thirteen-month-old London baby who has a rare genetic condition called congenital myasthenic syndrome. Baby RB cannot breathe on his own; artificial ventilation delivers air to him every three seconds. Every few hours, his lungs fill with fluid, causing a choking sensation, and doctors must use suction to remove the fluid. Both the filling and removal of the fluid causes the baby pain. Drugs seem to have made no difference in RB’s case. His body cannot survive without the ventilator.
His parents, who are separated, have been battling in court. Should the infant be taken off the ventilator and allowed to die? Or should the hospital continue treatment for this progressively worsening, physically agonizing, and dehabilitating disease? Ultimately, the father agreed with the mother: they will allow their child to die. According to the CNN.com article, the judge in the case said that the best thing for the baby was for “his time to end in a planned way, with the administration of a large dose of sedative, the removal of the ventilation tube, and his consequent death.”
A gutwrenching story. Sedate a baby. Take away his ability to breathe. Watch him die.
A parent’s nightmare. Who wants their child to be in pain? Who wants their child to die?
A divisive case, evoking responses that ranged from sadness to sympathy to rants about religion and the presence of a good God. Readers of the news article commented:
My heart goes out to the family. . . . I think we should just feel sorry for the parents and leave religion out of it. . . . This world is far too cruel to be controlled by a “loving God”. . . . It doesn’t have anything to do with God. They were just unlucky.
My heart aches for this family. When I try to imagine what it would be like to stand in ICU and look at my baby, and try for thirteen months to stimulate him in hopes that the medications and medical technology will help my child . . . My imagination cannot wrap itself around the parents’ pain, nor around this baby’s pain, nor around the “whys” of God allowing such a thing to happen. And then I am haunted by the question: What if this happened to me? How would I, as a believer in a loving, all-powerful God, view my situation?
It’s what the Puritans termed a “difficult providence.” Difficult because the darkness presses on our souls, the questions swirl in our minds, and God doesn’t seem to be within shouting range, much less our whispered cries of desperation. Providence because it is his will to work through the situation for the good of those who love him.
William Cowper was an 18th century poet who wrestled with this issue. Subjected to severe depression throughout his life, he attempted suicide three times, and nearly succeeded. He came to believe in God’s amazing grace. In fact, his pastor was John Newton. (Yes, the “Amazing Grace” John Newton.)
Every depressed person needs a guy like Newton in his life. The man wrote letters to him, encouraged him to write hymn lyrics to bolster his faith (Cowper penned the words to “There is a Fountain filled with Blood”), and once abruptly ended a vacation to help Cowper through a time of desperation.
Cowper was immeasurably helped by Newton, but his depression never quite subsided. He was still haunted by a conviction that he was damned, condemned by God, and couldn’t feel God’s grace in his life. There are two different versions of his deathbed. One (the one Christians love to hear) is that he looked toward heaven and proclaimed that he truly believed in a good God. The other (the one we’d rather not contemplate) is that he died in despair.
But he wrote a powerful poem that describes the idea of a difficult providence. It’s entitled “God moves in a mysterious way.” Here’s a few verses:
Ye fearful saints, fresh courage take;
The clouds ye so much dread
Are big with mercy and shall break
In blessings on your head.
Judge not the Lord by feeble sense,
But trust Him for His grace;
Behind a frowning providence
He hides a smiling face.
Blind unbelief is sure to err
And scan His work in vain;
God is His own interpreter,
And He will make it plain.
If I judge God by my “feeble sense,” I’m likely to come to the conclusions of the article readers: God can’t allow these difficult, senseless situations and still be a good God. He’s either cruel or nonexistent, and the family was just unlucky. I’ll scan his work in vain and start judging God. I’ll fall into blind unbelief, which is exactly what I don’t want to do.
It’s difficult, though, to look at a situation like Cowper’s or baby RB’s, and not be troubled at God’s will. Why should someone suffer from severe depression or congenital myasthenic syndrome? Could there really be a smiling face behind these situations? Could God truly have a reason—a good reason—for our suffering in this present life?
I don’t see the reason yet.
I can’t read God’s interpretation of his actions yet.
I don’t see the smile yet.
And yet someday I will.
Someday the clouds in my life will burst and rain down mercy. Someday God will make it plain why I had to suffer, what good he worked for me through it, what redemptive value it had. Someday I’ll see his smile. Someday, I will look into his eyes, see his love, and know that I am finished with pain forever.
For now, this is the hope I cling to in the midst of the darkness.
PS: Early Sunday morning (11/15/09), Baby RB died. Here’s the link to the news story: