Doctor’s advice notwithstanding, I held her during the holidays as she continued to waste away. What was even more disconcerting was her behavior: she wanted nothing to do with toys, books, Christmas or her two older sisters.“No!” she yelled whenever they came close.
On Dec. 31, our pediatrician called at 7:30 a.m. She had been worried about Molly after seeing her the previous day, and had returned to the hospital to review the chart. One of the brain scans turned out to be cause for concern; she wanted us to see a neurologist in a nearby city as soon as possible to check for brain disorder. Happy New Year?
“Molly’s brain isn’t the source of the problem,” the neurologist announced 58 long and sleepless hours later. “She’s obviously very ill, but she does not have a brain disease.” My husband and I were positively giddy driving home that night. Molly wasn’t going to die! Then we remembered we still had a sick kid on our hands, one who couldn’t even hold her head up in the car seat.
Not knowing what was ailing my child had to be the most frustrating experience in my 38 years on the planet. Doctors, too, were clearly uncomfortable about being unable to come up with a diagnosis for a 1-year-old who in two months had dropped from 23 to 18 pounds and lost all her body fat. Not that they didn’t try: because Molly was so sick for so long, she continued to be poked and prodded, sedated, sliced and scanned in order to look for what I started calling the “disease of the week.” Different specialists took turns chasing every possible lead-leukemia, chronic mononucleosis, neuroblastoma (another childhood cancer), infant botulism, neuromuscular diseases (like muscular dystrophy), cystic fibrosis, heart disease and any number of debilitating genetic disorders. While drawing her blood one Monday our pediatrician asked, “Should we add HIV to the list?” “Why not?” I replied over my baby’s screams. I was numb. There were weeks when I actually wished Molly. had cancer, just so she’d be able to begin treatment.
The next hospital stay, this time on the oncology ward in late January, brought more “theories of the hour,” but still no answers. It seemed as if everyone we knew had ideas to propose; we relayed every one to the doctors. Then finally, three weeks later on our third admission, with yet another doctor’s name on Molly’s tiny hospital bracelet, I heard the magic words: “We have a diagnosis: celiac disease.”
The doctors had not figured this out on their own, mind you.
Just by chance, a colleague of my husband’s-who’s not a physician-asked if we’d checked for gluten intolerance, a chronic disorder caused by a sensitivity to protein found in wheat, oats, barley and rye. Though Molly did not have all the classic symptoms (such as diarrhea), I asked the does anyway. New X-rays revealed demineralization of Molly’s bones caused by malnutrition. An intestinal biopsy showed severe damage, causing her digestive tract to be unable to absorb nutrients. And another blood test-her 18th-found celiac antibodies.
Once the doctors had a diagnosis, they were in familiar territory and could plan Molly’s rapid recovery. She needed nutrition, but fast, so they pumped fats and other calories through a catheter inserted into the large vein leading directly into her heart, plus a special formula to her stomach via a tube running from her nose. Within days of beginning treatment she showed exciting signs of improvement. New noises–happy noises–came out of her mouth, her eyes were no longer sunken, she smiled 10 times an hour instead of once every six days and she toddled on her stiff little legs down the hall to physical therapy. Hospital staff who had seen me carry her over my shoulder all winter cheered.
Two months ago Molly’s health seemed totally out of our control; now, amazingly, all she needs to thrive is to follow a gluten-free diet. We hope Molly is too young to remember the hell she went through before they found out what was wrong with her. Her illness was not without its costs, of course, and we (thank God) have medical insurance; I haven’t asked our carrier how it feels to pay $100,000 for a food sensitivity. At home, work came to a standstill, normal routines disappeared. Understandably, our other daughters felt ignored.
I doubt I will ever understand why the doctors at the hospital didn’t take our concerns seriously in December, until another month of malnutrition left Molly’s body so stressed that in January it appeared she had every disease in the book. Our pediatrician was the only physician who trusted our parental instincts from the outset. Should she, a practitioner with a full load of sick children, have to second-guess and sometimes bully the academic experts to care about the patients they share? And what if my husband and I hadn’t come up with the winning diagnosis? How much longer could Molly have survived if we hadn’t been so persistent? If our experience is not unusual, American health care is in even worse shape than some political candidates suggest.
Molly has rediscovered playing, and her favorite toy is a doctor kit. She obviously has a greater capacity for forgiveness than her parents.
