Shortly after I learned I was pregnant with Holly, I began to be uncomfortable praying for a healthy child as I had for all my friends. I had a niece with a disability and my husband was close to a couple, each of whom had significant disabilities. I realized that in this broken world, not everyone could have a healthy child. With reticence, I began to share my thoughts with my husband only to learn that he'd been thinking the same things. So we prayed for the perfect child God had for us, whatever that meant. We also prayed that He would give us the grace and strength to deal with the problems or disabilities this "perfect" child would come with. So, it was a happy surprise that our tiny daughter, born on Mother’s Day, 1979, seemed so healthy.
We took her home, then brought her for her first visit to the pediatrician when she was 10 days old. Instead of losing the usual few ounces as we expected, she had lost a full pound. I was alarmed, but the doctor said it was really not a problem. I was breastfeeding and began to try everything I knew to make sure I had enough milk for her and to help her feed. Nothing seemed to help. She was two months old before she regained her birth weight of 7 lbs. 10 1/2 oz.
I'd never had a baby before, so I wasn't entirely sure what to expect, but her stools didn't seem normal to me. They were thin, runny, yellow or green, and sometimes full of mucous. And the smell never failed to run visitors out of the house. Again, I consulted the pediatrician, showing him one of her "dirty" diapers. Again, he was full of reassurances, telling me that she was fine, though I had a nagging feeling he was wrong.
Though it was all supposedly normal, he had me bring her to his office every week for a weight check. When I voiced concerns that her weight gain or stools didn’t seem normal, he would simply say that “normal was a range.”
Finally, when her weight didn't improve, he diagnosed it as "failure to thrive." I was cut to the heart – wounded. If he could only have seen how I held Holly and played with her. How I nursed her for 45 minutes every two hours to try to fill her little tummy. If he could have been there at night when I would heat two towels; one to go in between my stomach and hers as I lay flat on my back, holding her close, trying to ease the cramps that kept her awake and made her cry. When one towel cooled, I'd switch it with the one in the oven and repeat this over and over until 2:30 or 3:00 in the morning, when she was finally exhausted enough to be put her in crib to sleep.
At four months, we stopped breastfeeding because I “obviously” didn’t have enough milk. We switched to soy formula, which did nothing to help her, and still he insisted there was no physical problem.
At six months, we started her on solids. I ground her food from what I cooked, leaving out the seasoning. During the Thanksgiving holiday, we gathered with my family to celebrate. My sister, Robyn, observed with disbelief that I would fill Holly’s plate fuller than my own and that often within 30 minutes the food would reappear, undigested, in her diaper. Being a mom herself, she was shocked at the amount of food Holly was eating, while still gaining little weight.
About three weeks after Christmas, Robyn called me to ask if Holly was still eating so much. When I told her she was, Robyn asked how much weight she had gained. I told her that I thought maybe two or three ounces. Robyn was alarmed and told me it was imperative that we have a sweat test done. I confirmed her fears when I told her that Holly tasted salty. I had just read an article about cystic fibrosis, and the symptoms were too similar to ignore. That was when I learned the reason for the saltiness I tasted on Holly’s skin. Robyn made me promise to hang up the phone and immediately call our pediatrician and insist on a sweat test. I called him and received all the old reassurances – “normal is a range.” “But she tastes salty,” I said. He responded, “Oh, my God. I’ll call Children’s Medical Center and set up a sweat test right now.” He called back with an appointment for the next day.
Next: The Diagnosis
