The Diagnosis

Please forgive me for taking so long to post again. I've been avoiding it, since this is a painful topic to think about, and writing of it truly takes a lot out of me.

My cousin, Bettilu, joined me on December 12, 1979 to take Holly to Children's Medical Center in Dallas for a sweat test, still the definitive diagnosis for cystic fibrosis. The techs took each of Holly's little forearms, scrubbed them clean with alcohol, then attached electric probes that would emit a small electric shock -- just enough to tickle a bit -- to stimulate the sweat glands. Next they used plastic wrap to attach cotton pads that had each been previously weighed. They wrapped the plastic wrap tightly around her arms several times, again to stimulate sweat. Next, we spent 30 minutes entertaining my little seven-month-old, waiting for her to sweat enough onto the pads so they could be tested for their chloride content. When the timer signaled the end of the 30 minutes, they weighed the pads to determine whether they contained enough chloride for the test. They did.

Leaving the hospital, my fears began to mount. Just in the past few days, I had learned about cystic fibrosis and found it difficult to believe that my precious daughter could have something so awful -- a disease that could threaten and take her life. Surely not. Surely, it was something else, a much more palatable explanation. An explanation we could live with, literally. But then, I would recount each of the symptoms and how they all added up to one diagnosis -- cystic fibrosis. Before I had read the article earlier in the week, written by a mom whose daughter had died of the disease, I had said something like, "Isn't that the disease Jerry Lewis raises money for?" Clearly, I knew nothing. But, thankfully, Bettilu took my mind off my fears and turned my attention toward a more practical and mundane matter, such as lunch. She decided to treat me to one of the finer tea rooms in Dallas. The maitre d' was not thrilled to admit a little one to his swanky place, but not many people argued with Bettilu and won. We were shown to a table. I have no idea what I had for lunch, but I remember clearly that Holly had strained peaches. Since this esteemed establishment kept no high chairs on hand. I had to feed her while holding her squirmy little self on my lap. Never an easy task with little one who'd been cooped up too long and who just wanted to get on the floor and crawl around. When we were finished, I went to the Ladies' Room. Finally, washing my hands, I looked into the mirror and realized that my face was covered with little, hand-sized smears of strained peaches. I laughed out loud in the privacy of the Ladies' Room and felt a sense of relief from the strain of the morning.

Bettilu took us home and was determined to stay with us until Holly's daddy came home from work. She was not about to leave us alone. Late in the afternoon, I got antsy. I told her that there was no way I could sleep that night without knowing whether the test was positive or negative. So, I began making phone calls to my pediatrician's office. He was out for the day, so I left messages for his colleague who was covering. I was about to give up on his returning my calls when the phone rang. (My heart is beating faster even now as I write this and remember.)I answered the only phone in our tiny house, which was in what my son-in-law would call our "one-butt kitchen." I faced Bettilu as the physician introduced himself and told me that he had the results of the test. He asked what I knew about cystic fibrosis. I said something like, "Well, I know it affects digestion and they have to take some kind of pills to digest their food." He replied, "That's true, but there's so much more than that." Without asking if there was someone with me or checking on my emotional state, he informed me that children with cystic fibrosis die -- always. He said it was possible she might live to go to school, but it was much more likely that she would die before she was two. I collapsed against the stove. I heard in the phone, "Mrs. Shute, Mrs. Shute? Are you there?" I had lost the ability to speak as I went into a kind of emotional shock. I remember thinking, "This is what a tidal wave must be like," as I was hit with overwhelming grief that washed over my body. The grief was so intense that I really thought I would die. Instead, I felt myself shutting down. It started at the top of my head and worked its way down through my body, removing all emotion so that I could survive. I finally found my voice and responded to him, asking what we should do next. He instructed me to bring Holly to the office the next morning to see our own pediatrician.

I didn't cry. I was too much in shock to feel. I simply looked at Bettilu and told her that it was time to fix dinner. I couldn't think of the reality of the doctor's words as my beautiful Holly lay sleeping unaware in her crib.

My husband came home from work, blissfully ignorant of what I'd just been told. I reported the news to him just as it had been reported to me. He looked at me, said, "We dedicated her to God, we can't take her back now." Then he walked quietly out of the kitchen into our bedroom and slammed the door. He stayed there alone for hours.

If I had thought that I could not sleep without news of the diagnosis, I certainly could not sleep with news of the diagnosis. I stood over Holly's crib for a long time, just watching her breathe, wondering how this largely unknown -- to me, at least -- disease could be stealing her away one breath at a time, even as I watched.

The next morning, we visited our pediatrician, who was pale, subdued and apologetic. He'd missed it. For those many months that he'd told us there was nothing wrong, CF had been doing its thing -- causing her to scream at night from stomach cramps, endure constant hunger because her food was not digested and feel the weakness from a lack of nutrition -- and he could have prevented it.

He asked what his colleague had told me and was appalled. He apologized again, and said, "Cystic fibrosis is bad, but there is some hope. Let me tell you the truth about it," and he proceeded to do that. We breathed a tiny sigh of relief to learn that the average life expectancy was 18 and that she would surely live to go to school.

He also told us that Children's Medical Center right here in Dallas had an excellent CF center where she could be treated and that their protocol was to admit those recently diagnosed. He promised to make the arrangements and called later in the day to tell us to take her in on Saturday for that was the first day they would have an open bed. We thanked him and set about making the painful calls to family and friends.