When dreams become dust

Your girls may never play soccer or go to the prom, but who am I to say what a life is worth? —Dr. Kirk Milhoan, pediatric cardiologist, Wilford Hall Medical Center, San Antonio, Texas

What is a life worth? At a whim I can jump on the Internet and search out the value of an ounce of gold or a Mediterranean cruise or a flashy red BMW. But what is a life worth?

Some say life is priceless, but with 4.5 billion of us crawling the earth, can that be true? Health-care providers, insurance companies, courts, governments and ethicists argue that the value of a life can be reduced to a mathematical formula.

We speak glibly about “quality of life”. It’s one of those I-know-it-when-I-see-it sorts of things that defies definition. Jet-setting movie stars have it in spades, starving Somalian refugees don’t. Vineyard-owning yuppies in the Napa Valley have vats of it, people with Alzheimer’s, ALS, HIV or any other alphabet-soup illness don’t.

Job, the tormented man of faith, had abysmal quality of life. In a single day he was utterly wiped out, going from riches to rags before the sun set. His entire family was killed in a freak accident, his stock evaporated, he became ill, he was in pain and his friends treated him like a pariah. In Job 3:11 he groans, “Why didn’t I die at birth as I came from the womb?” (NLT) How many suffering people have tearfully wished the same thing?

In the end, God and Job had a conversation—God’s part went something like this: I am loving, I am merciful, I am just, I am good. Trust me, Job. I know what I’m doing.

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. —Romans 8:28, NLT (The apostle Paul in a letter to the Christian church in Rome, where the faithful would soon be fed to lions for sport.)

Matt and Dawn were thrilled when they found that she was pregnant with twins. They busied themselves with all the preparations of expectant parents. They prayed earnestly for God’s protection over the children growing within her. As her belly swelled and the babies moved, they dreamt of that fast-approaching day when they would return from the hospital with two beautiful children.

At 32 weeks, a routine ultrasound shattered those dreams. Something had gone terribly wrong during Dawn’s pregnancy: the precious twin girls she carried had not separated—they were conjoined at the chest. I wasn’t present in the examination room, but I can imagine the horror and disbelief they must have felt. Did they feel abandoned by God? Like Job, did they wish they’d never been born?

Not long afterwards, Dawn went into premature labor. To their credit, Dawn and Matt chose to give these babies every chance at life, and against all odds, the twins survived. God did not heal their deformity, but he spared their lives.

Victoria and Brynleigh share a single, six-chambered heart, a liver and perhaps portions of their intestines. They face each other, arms hugging. They are on ventilator support. Together, they weigh less than nine pounds. Day by day, they are gaining strength and making progress. But progress towards what? Whatever the future holds, it is certain that they will need a great deal of special care. The doctors who have examined the babies are convinced that there is no way to separate them without endangering their lives.

“In a way, they’re almost a test of us,” says Dr. Kirk Milhoan, Wilford Medical Center’s pediatric cardiologist. “They’re truly the least of our brethren and the way we treat them says a lot about us as a society.”

Two questions beg to be answered.

• Why, despite the prayers of faithful people, does God allow such things?
• What quality of life will these twins enjoy, and are we guilty of cruelty by allowing such severely-deformed children to live at all?

Dr. Peter Singer is Professor of Bioethics at Princeton University. In his book “Practical Ethics,” he argues that children are essentially interchangeable. He believes parents should have the right of “euthanasia in the case of severely disabled newborn infants”, a right which would extend all the way to the child’s first birthday. Singer is proposing a kind of one-year, bumper-to-bumper kid warranty. If the child turns out to be a lemon, the couple could legally send him back to the manufacturer and conceive a new one.

Singer, a utilitarian philosopher, is quite serious. Life may be special, but in no sense is it sacred, in his view. Thus, life becomes another commodity, valued by making case by case judgments about costs vs. benefits. Where the cost to society for a given life seems excessive, or where the “quality of life” seems marginal, Singer proposes euthanasia (literally, “good death”) as the answer to suffering. The Dutch have enthusiastically embraced Singer’s philosophy.

Contrast that view of life with King David’s:

You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
Your workmanship is marvelous—and how well I know it.
You watched me as I was being formed in utter seclusion,
As I was woven together in the dark of the womb.
You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out before a single day had passed.
—Psalm 139:13-16, NLT

Dr. Milhoan says that children such as Victoria and Brynleigh teach us to be compassionate, to be selfless, to have servant hearts. C.S. Lewis, the great Christian apologist, was once asked, “What good can come from suffering?”

What is good in any painful experience is, for the sufferer, his submission to the will of God, and, for the spectators, the compassion aroused and the acts of mercy to which it leads. —The Problem of Pain, C.S. Lewis

Suffering breaks our hearts. But the Christian perspective is that suffering is not a thing to be feared. In the midst of our suffering, God comes alongside us. We experience his love more intensely. We experience the humbling privilege of being served by those who love us.

And suffering serves yet another purpose: it strengthens and purifies our faith in God.

Pure gold put in the fire comes out of it proved pure; genuine faith put through this suffering comes out proved genuine. When Jesus wraps this all up, it’s your faith, not your gold, that God will have on display as evidence of his victory. —1 Peter 1:7, The Message

Victoria and Brynleigh will lead remarkably difficult lives together. When we reach out to those who are suffering, when we encourage them, help them, comfort them and pray for them, we give them hope. We show them evidence of God’s love and mercy. We ease their suffering. We improve their quality of life.

In a world without suffering, would we ignore God? Or each other? Would we ever learn compassion? Pray for Victoria and Brynleigh.

(Update: After spending six months struggling for life in the Wilford Hall neonatal intensive care unit, conjoined twins Brynleigh Belle and Victoria Grace Smith died Thursday night (29-jan-04).

Parents Dawn and Matt Smith, after discussions with doctors, decided to withdraw the ventilator support the twins had needed to breathe since their birth July 25.

Brynleigh and Victoria each had two arms and two legs and were joined from just below the collarbone to the belly. They shared a heart, liver, diaphragm and parts of their intestines.

In the end, doctors and medical technology couldn’t overcome the limits of the girls’ complex conjoined anatomies. And the parents, after watching their daughters grapple over recent weeks with infections, as well as lung and liver damage, decided the best thing to do would be to withdraw support.

“It was not just one thing,” Dawn Smith said. “We had to look at the whole picture, at the whole package. They are incredibly sick. They can’t get off the ventilators. I think they are just telling me, ‘Mommy, mommy, I’m tired. I want to rest. I want to go home.'” —Nicole Foy, San Antonio Express-News, 30-jan-04.)