July 18, 2012
A hunger that cannot be fed
A chronic, debilitating disease strikes one young boy, inspiring a whole community
When Gudrun and Daniel Brock opened their front door, Aaron, the couple’s 6-year-old son, ran to hug his teacher from Wilshire Boulevard Temple, whom he had not seen in more than a year. Only she heard him whisper: “I missed you so much.”
At first glance, Aaron looked like any other boy his age — smiling, his long-lashed eyes bright and full of energy. But Aaron was not wearing a shirt, and his scars were apparent — one near the shoulder blade, two above the clavicle, two by the right side of his ribs, one on his chest, two on each side of his navel, scars on both arms and even his hands. Most noticeably, there was a white plastic plug on his belly, to allow his stomach to connect to a feeding tube so he can eat.
Like most boys his age, Aaron was proud of his scars. “This is my shark gill,” he said, pointing to one. Then he added mischievously: “I’m pretty brave.”
“Are you staying for dinner?”
“We’re not sure,” the visitors said.
Looking up at the ceiling, Aaron replied, slowly: “One never knows ...”
“Actually, he needs to eat now,” his mother told the guests.
She gently connected a thick syringe full of feeding formula to a tube and plugged it into Aaron’s stomach, releasing the formula slowly.
The boy winced.
After a few minutes, Aaron laid his head on the table. “I’m not feeling well. I have a tummy ache,” he said.
There was a red cup on the table: Aaron retched, then spat, into the cup.
“Daddy,” he said, “It’s starting again. Can you take me?”
“OK,” Daniel said, picking up his son’s frail body.
Aaron peered over his father’s shoulder and said, “Sorry, guys.”
Daniel carried the boy to his tiny bathroom at the back of the house. Sounds of crying and retching continued to echo from there to the living room for the next four hours, without stop.
Once her son was out of earshot, Gudrun confided, “You have no idea what our life has been like, every day, for these last six years. And it’s gotten worse. Especially the last six months. We need help.”
Four and a half years ago, Aaron was diagnosed with a chronic illness known as Cyclic Vomiting Syndrome (CVS). But Aaron’s problems actually began at birth, when he was quickly diagnosed with Tracheoesophageal Fistula/Esophageal Atresia, a defect in which the esophagus is shortened and closed off.
Aaron’s particulars are unique, but the condition of CVS is more prevalent than most people know. “To my knowledge, there has been no research linking this birth defect to CVS,” said Dr. Richard Boles, a clinician for the CVS Association, an associate professor of pediatrics at the Keck School of Medicine at USC and director of the Metabolic and Mitochondrial Disorders Clinic at Children’s Hospital Los Angeles. “However, it has been determined that birth defects are more common in patients with CVS.”
At just 4 days old, Aaron had his first surgery, this one to connect his esophagus to his stomach. He spent the next seven weeks in the hospital’s neonatal intensive-care unit.
“After he was discharged, we had a positive outlook. We thought the worst was over,” Gudrun remembered. “We had no idea what we were in for.”
Because of his condition, Aaron initially was labeled as suffering from “failure to thrive.” Then, at 18 months, he developed CVS, although it was not officially diagnosed until he was 4.
Dr. Ron Bahar, a pediatric gastroenterologist, has treated several patients suffering from CVS, which is characterized by recurring, prolonged attacks of severe vomiting, nausea, prostration and intense abdominal pain.
“CVS is a variant of the migraine headache,” Bahar said. “The main cause is genetics, and the way one responds to his or her environment. Stress, certain food, sunlight, infections such as colds or flus and intense excitement can all trigger the abdominal migraine. The trigger then sets off a cascade of events, such as abdominal pain, headaches, fevers, diarrhea and dehydration — on top of the vomiting and nausea.”
For Aaron, Gudrun said, triggers can be any form of stressors, including physical ones — like a virus — or psychological ones, including even the excitement of a Shabbat dinner.
During an episode, Aaron’s vomiting occurs at frequent intervals, for an average of one to four days. Between episodes, he appears and acts pretty much like any other kid.
The disease is not yet well known and, perhaps for that reason, not often diagnosed. “Three studies have shown that about one in 50 school-age children suffers from CVS,” Boles said. “However, we don’t even know about a hundredth of those cases, because so many are misdiagnosed. It often takes years before a diagnosis, and even then it is often just assumed [to be] a stomach flu or food poisoning.”
The Brocks want to spread the word so others suffering from CVS will get help more quickly than they did.
Knowing what was wrong with Aaron, and how best to treat him, was a struggle from day one, Gudrun said. “On the day he was born, he latched onto me. But I knew something was wrong. He was breathing bubbles out of his lips. And every time I’d go to feed him my milk, he was coughing, and coughing it back up.”
When the Brocks brought Aaron home after his first surgery, he continued to have trouble eating and gaining weight, so at 22 months he underwent surgery again, this time to give him a feeding tube to deliver nutrients. Aaron’s calorie intake improved; nevertheless his eating issues stubbornly remained. There is a procedure called a Nissen fundoplication, in which the top of the stomach is wrapped to the base of the esophagus and the area is then sewn together. By the age of 2 1/2, Aaron had undergone this surgery not once, but twice.
Once Daniel and Gudrun understood the nature and treatment of Aaron’s illness, things started to improve. By September of last year, Aaron was seeing a pediatric neurologist, who helped arrest the cyclical nature of the disease by using anti-seizure medications. Aaron began kindergarten at the Brawerman Elementary School of Wilshire Boulevard Temple, and four months passed without an episode. There, because of his upbeat nature, Aaron was so well loved that he was nicknamed the “mayor” of the school community. Everyone who met him could not help but notice something remarkable in the boy.
As Cory Wenter, who interacted with Aaron regularly as director of security at the synagogue, put it: “Aaron, in particular, is one of the most incredible children I have had the pleasure to know. His innate wisdom has always struck me as one of his most curious and admirable qualities. This, combined with his enthusiasm and playfulness, is a truly inspiring combination. Most of all, I am staggered by Aaron’s resilience.”
“Aaron is a fighter,” Wenter said.