2 ~ (June 1983)
The Midwives Feared God
Sometimes, in uncharitable moments, I wish I could have filmed arrogant Dr. R stumbling all over himself to explain why he cancelled Karis’s surgery. His x-rays—properly taken and developed and interpreted—showed no more evidence of bowel obstruction than the ones at CDH.
Over the next days, Karis had every examination then known to pediatric surgeons and gastroenterologists. Each morning when the docs made rounds, they reported on the normal results of whatever had been tested the day before, and explained the exam they had planned for this day. By all accounts Karis was the most thoroughly tested, most normal infant in the world. Yet she could not keep anything down, her intestines never functioned, and of course she steadily lost weight on her “diet” of IV sugar water.
Three weeks (to me it felt more like three years) from the date of her birth, Karis made her first visit to an operating room. A catheter was inserted through a large vein into her heart, so that she could be nourished with total parenteral nutrition (TPN, also called hyperalimentation or hyperal): elemental nutrients that dripped straight into her bloodstream, completely bypassing the digestive system. This was a relatively new technology that in 1983 had seldom been used for anyone so young.
On TPN, Karis began to thrive. As she gained weight and began to fill out, she soon looked as completely normal as all the tests showed her to be. Aside from the large clear glass bottles of yellow TPN and milky-white lipids that accompanied her on an IV pole wherever she went, Karis looked out of place in that hospital full of sick children. No longer constantly hungry, she was a happy, winsome child whom everyone loved. The nurses dressed her up in pretty dresses, taped matching bows to her bald head, and took her around with them in a stroller to cheer up the other patients and their families.
As one long hospital day followed another, disrupting our home life and completely upsetting my son’s and my husband’s equilibrium, I began to imagine that it was the hospital and those doctors that were at fault. Obviously, Karis was perfectly fine—anyone could tell that just by looking at her. If I could take her home, we would end this ridiculous charade. I lay awake at night plotting our escape. But visualizing Karis back home immediately brought to mind those nightmarish scenes of her bilious vomiting all over everything. My neurotic bubble would burst and I would find myself stuck again, back at square one, completely at the mercy of those glass bottles on a pole. Attempts to give Karis liquids by mouth continued to end in disaster.
Day after endless day I wheeled Karis in a stroller with attached IV pole all around that huge hospital. We were making no progress at all toward coming home and getting our life back together. Each night I would figure out which of my friends I had most recently bothered least, and call her to request care for Danny the next day. It seemed I could put our car in automatic and it would take me directly from our house in Wheaton to the children’s hospital in Chicago.
Finally, Dr. R had an epiphany. He remembered an article he had read some months before by a Japanese surgeon describing a patient somewhat like Karis. Dr. R went to the medical library, tracked down the article, called the surgeon in Japan, learned the lab procedures for visualizing the ganglia (intestinal nerves) in intestinal biopsies, taught these procedures to the hospital pathologists, and announced to me that he was going to do exploratory abdominal surgery (a laparotomy).
Thus at five weeks, Dr. R opened up Karis’s abdomen and biopsied her entire digestive tract, from her stomach to her rectum. He also applied direct electrical stimulation to her intestines, starting at the end of the colon (the large intestine) and working his way up. Her colon did not respond at all; it seemed to have no “wiring.” As he transitioned into the ileum (the small intestine), at one point there was a response. Dr. R cut her intestine there and brought the end out through her abdominal wall, creating an ileostomy. He left the colon and attached piece of small bowel in place, because he still didn’t know what was wrong and whether it might be possible later to reconnect the intestines.
By eliminating the “dead” bowel, we hoped that Karis’s responsive bowel—the part that had reacted to the electrical stimulation—would start functioning. But it didn’t. Long after she had healed from the surgery, there was still no action on the part of her intestine.
It had been terribly hard for us to let our little girl be cut open like that. We passionately desired to see God to a spectacular miracle, revealing his power to those pagan doctors. It seemed that the surgery had accomplished nothing except leave Karis with a perennially clean drainage bag around her strawberry–like stoma, and a big scar on her tummy.
I prayed over that ileostomy, begging God to make her intestine function. As agonizing as it was for me to see Karis’s little tummy disfigured, I told God that if the stoma could be useful in making her well, I would never, ever complain about it. Day after day, prayer after prayer, nothing changed.
When the pathology report on the biopsies was complete, Dr. R and his team of surgeons scheduled a conference with Dave and me. They explained to us that Karis had only about one fifth of the normal number of nerves in her intestinal tract and stomach, and those she had were small and malformed. The surgeons didn’t think her intestines would ever function. Dr. R told us that he had consulted with colleagues from major children’s hospitals across the country, and had identified only five cases similar to Karis’s. All five had died in early infancy. It was only because of TPN that Karis had lived long enough for her problem to be diagnosed, a condition they described as “hypoganglionosis.”
Dr. R explained that Karis couldn’t be nourished indefinitely with TPN because it was caustic and soon would start destroying her other organs. Within a year, if she were still alive, Karis would be little more than a vegetable, and both our suffering and hers would be multiplied many times over what it already had been. The older she got, the more attached to her we would become, and the more traumatic her inevitable death.
In addition, the surgeons asked us to take into account the financial cost of continuing TPN. At that time her hospitalization and TPN was costing $1000 a day. That and the costs of her surgeries, and any unknown future crises, would soon use up our insurance limit of $200,000 per patient per year.
From the doctors’ point of view, the whole situation was untenable. They “knew” that Karis’s intestines would never work, and life without functioning intestines was impossible. They recommended that we say goodbye to Karis, and then just leave her there at the hospital while they sedated her and stopped the TPN so that she could die, “within a few days,” without suffering. We should go home, take care of our 22-month-old son and plan Karis’s funeral. We would be notified when the time came for her burial.
After explaining all this, they took us to see a baby whose mother had made the “correct” decision to not interfere with nature. The infant girl, born with a short gut, lay sedated in a crib all alone in a large room. The docs wanted us to see that the baby was not suffering.
Dave and I had suspected that the doctors might suggest something like this, and had already prepared our response. We believed that the power of life and death belonged in God’s hands, not ours, and that we should support life as long as there was a way to do so. We would not agree to discontinue TPN. Instead, we asked to take Karis home.
The doctors flat out refused our request. They had never before sent a baby home on TPN and imagined all kinds of things that could go wrong. We found this ironic. Since they were recommending that Karis be allowed to die, why should they be concerned if a complication arose at home? Anyway, I was a nurse. I could be trained to care for a central line and administer TPN. And we were not going to agree to just leave her to starve.
After several minutes of heated discussion, we reached an agreement. Both the doctors and we would take the weekend to think further about the situation. If by Monday we had not come to our senses, they would reconsider the absurd idea of letting us take Karis home.
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