BABY CHAYA WAS A BEAUTIFUL, healthy infant with bright blue eyes, a shock of dark hair and a double chin that hung over her scalloped collar. Her parents had waited many years to find each other, and now their joy was mirrored in their firstborn child’s sparkling eyes. They spent hours rattling toys in front of her face, making silly sounds and exchanging comments about this wondrous being with which Hashem had blessed them. At three months of age, little Chaya was devouring her bottle and asking for more. When her parents stood her up on her legs, her toes grasped the carpet and held firm. When they spoke to her, she cooed back to them, much to their delight. Her pediatrician agreed with what her grandparents, aunts and even the babysitter all said—this child was exceptional. Developmentally, she was in the 90th percentile of all infants. The wait for her had been long but well worth it. But a month later everything changed. It started when the baby became very fussy and began crying much more than before. She spit up everything she was fed and seemed lethargic. The pediatrician found nothing wrong. But as the days wore on and nothing Chaya ate stayed down, her parents grew alarmed. A few weeks later her growth petered out. Up until now she’d been a roly-poly thing; people had often said, “Wow! Are you sure she’s only three months old?” Then she began to lose weight. She’d gain half a pound but lose it right away. She never moved above the 14-pound mark. She had previously been able to maintain a sitting position, but now could no longer lift her head. Her muscle tone was poor and her legs were unable to support her.The pediatricians all shrugged, not knowing what to say.
Their first suspicion was that the immunizations she had been given at three months of age could be responsible for the damage. She was admitted to Mount Sinai Hospital, where she underwent extensive testing over the course of two weeks. Finally, she was given a diagnosis: failure to thrive, a catch-all category. “She needs a feeding tube,” the doctors said. “It’s a bump in the road but eventually she’ll be fine.” Her mother refused to believe that the diagnosis was correct. If the problem was failure to thrive, why had she experienced normal, even exceptional, development for the first three months of her life? There must have been something that triggered the problem. What was it? Without complete confidence in the doctors who were caring for her and without agreeing to the procedure, Chaya’s parents took her home, intending to get a second opinion. Chaya continued to deteriorate. After every feeding she would burp, hiccup and then vomit. Her parents took her to every pediatrician and specialist covered by their HMO. They even tried reflexology and other alternative therapies, but nothing worked. Their baby was clearly very ill. That’s when I entered the picture. As Chaya’s doting aunt, I couldn’t bear to see how enervated and limp she was when other babies her age were swimming across the linoleum. By then my brother, his wife and their little daughter had spent another few weeks at New York Presbyterian/Weill Cornell, where Chaya was subjected to another battery of tests. But they ended up back at square one, with a sick baby and no answers. They were determined to comb the world for a cure. A ray of hope appeared when they heard about a feeding clinic in New Jersey that had helped many people, but it was prohibitively expensive and wasn’t covered by their insurance plan. They had no funds. The clinic doors were closed to them.
By this time, eight months had passed from the time Chaya had begun to exhibit symptoms. She was suffering visibly, blinking as if keeping her eyes open was a strain. She lay limp and listless in her parents’ arms. Another three specialists were recommended—a top internist, a neurologist and a specialist in genetic diseases; surely one would get to the bottom of it. None of them were covered by my brother’s insurance, but he scheduled appointments with all three of them anyway. The earliest slots he could get were two months away. On the Ribnitzer Rebbe’s yahrtzeit my brother went to the Rebbe’s grave and poured out his heart. He was desperate for his daughter to live. At least if they knew what was wrong, they might be able to do something about it. I knew I had to get involved. I reached out to several organizations, but most of them dealt with known diagnoses. Still, I was undeterred. I continued to make phone calls until a referral agency directed me to a Mr. Brill and his organization, Tikvah L’Refuah/A Hope to Heal, whose primary mission is to alleviate the short-term financial burden of adults and children stricken with acute symptoms by subsidizing their health insurance premiums. We were extremely grateful when Tikvah L’Refuah agreed to underwrite a first-rate insurance policy for several months. I called the specialists’ offices to update them on our coverage. Then we held our breath and waited.The first appointment was with the genetic disease specialist. It was scheduled for Simchas Torah, but Chaya and her parents were given the go-ahead to travel to his office on Yom Tov because it was a case of pikuach nefesh. By this time Chaya was deathly ill.
The doctor took one look at Chaya and smiled confidently. “It’s obvious that she is suffering from a genetic disease,” he pronounced. He was so sure of it, in fact, that he didn’t need to run any tests to confirm it, but since they were going to the neurologist the following week, he would ask the neurologist to do genetic testing as part of the blood work. This would save poor Chaya, whose blood vessels were very thin, from being poked with needles unnecessarily. My brother and sister-in-law came home with a heavy weight on their sagging shoulders. Google quickly robbed them of any hope, informing them that their baby would be a complete vegetable at five and would not live past 19. Why the specialist had been so excited about making the diagnosis was anyone’s guess. Our family was thrown into mourning. All we could do was wait for the next doctor’s appointment. The following week, during a visit to Dr. Engel, the neurologist, Chaya underwent an MRI, but for some reason the test took much longer than usual. The mystery was solved when the technician informed Chaya’s parents that they had also done a spinal tap. My sister-in-law was angry that they had done this without parental consent. The nurses also told them that Chaya had fainted three times during the procedure and frequently lost her breath when she was crying, so they were insisting that she remain hospitalized for observation. Her parents waited and paced.
Three hours later they were sent home, having been told that they would hear from the doctor within a week. It was only a few minutes until Shabbos. They rushed home as fast as they could, but the neurologist called them before they got there. “Please turn around and come back,” he said. A team of doctors and nurses was waiting for them in the emergency room. “Do you trust me?” Dr. Engel asked them. “Why? What do you mean?” “We need to operate right away. She has a brain tumor.” He explained to the dazed parents that while Chaya was in the MRI, the technicians could already see how big and vicious the tumor was. Protocol, however, did not allow them to say anything to the parents, so they had made them wait for three hours until the neurologist could be consulted. They had also conducted the spinal tap because they knew it would be necessary and Chaya was already under anesthesia. Now that the doctor had arrived, emergency surgery was indicated. It was not to be postponed for even an hour. Chaya’s parents looked at the scan. Even with their untrained eyes they could see the monster clawing at their daughter’s brain. They gave their consent. A shunt was inserted in Chaya’s brain and 14 ounces of fluid were drained immediately. No wonder she had been diagnosed with failure to thrive. All of the doctors had kept on insisting, “Look, she’s not gaining weight, but her head is growing proportionately.” In truth, her head had been growing because it was filled with fluid that couldn’t drain and an increasingly enlarging tumor. Had she had a feeding tube inserted several months before, her brain would not have been able to withstand the added pressure,and the result would have been dire.
Now, with the shunt in place, they could safely insert a feeding tube to help her regain some strength. The tumor, which had been undiagnosed for eight months, was located in the part of the brain responsible for fine motor skills. It was also the cause of Chaya’s lack of appetite and vomiting. Dr. Engel couldn’t promise to remove more than 30 percent of the tumor because it was intertwined with the delicate brainstem, but he ended up taking out more than half of it. My brother and his wife both gave up their jobs in order to stay with Chaya in the hospital. Over the next two weeks she had five surgeries—to insert a temporary shunt, a permanent shunt, a feeding tube and a chemo port, and finally the brain surgery itself. Every time the nurses approached she’d start kicking and wailing, so Chaya’s mother eventually learned how to perform some minor duties, like putting food into the feeding tube. Today, Chaya is five weeks into her chemotherapy. Her parents take her to the hospital once a week for treatment and care for her at home the rest of the time. The prognosis is not rosy, but her parents are hoping and praying for the best. While Chaya’s healing is ultimately up to Hashem, they are buoyed by the knowledge that she is finally getting the best possible treatment.
