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.
Those first four months of kindergarten were the best time of his life thus far, according to his parents. The entire family was hopeful, glad to be able to offer Aaron a childhood with Jewish values. At that time, hopeful he could begin to have a more typical life, they also enrolled him in a program at a rehabilitation center, with the goal of removing the feeding tube. More than anyone, Aaron himself wanted the chance to eat and play on the playground with his friends without constantly having to carry his feeding apparatus in a backpack.
To that end, Aaron was enrolled in a 19-day feeding program that, as it turned out, instead of forwarding his progress, caused him to contract a gastrointestinal infection and suffer an episode worse than any before.
“We didn’t even know if he would be coming home with us at the end of the program,” Daniel said. “The trauma done to him was unbelievable. This was a kid who came in believing he was going to go home to finally eat lunch every day with the other kids at school. It wasn’t just physical damage they did to him, but what happened to his spirit.
“It was the very first time,” Gudrun said, “that I saw defeat in my son’s eyes.”
Aaron now goes to his bedroom to be alone when his symptoms begin. He asks that the lights be turned off and the room be kept absolutely quiet. His most recent episode of CVS lasted nine days.
The downturn in Aaron’s health has thrown the entire Brock family’s life into upheaval. Gudrun, who operates a small business as a personal organizer, had to put her work aside as Aaron’s health began to decline. The recent loss of spirit, inability to gain weight, the constant retching, demanded that both parents attend to his needs at home 24 hours a day, focused on finding immediate medical, social and financial solutions.
But Aaron’s baseline health has been slowly improving recently, and Daniel — who once worked as an executive in the film-music industry, as well as working in international business development and renewable energy — is now urgently look for work. The demands of health insurance, medical bills and mortgage payments have been piling up, and foreclosure proceedings have begun on their home while their day-to-day lives have been consumed with the minutiae involved with bringing their son back to health.
Just when things seemed to be at their worst, however, significant help began to come to them through a fortuitous encounter at a bar mitzvah. There, Daniel and Gudrun were seated next to Wilshire Boulevard Temple’s Cantor Don Gurney and his wife, Nancy, and in the course of conversation, they told their story about Aaron and his CVS. The Brocks had been temple members for quite some time, yet the Gurneys were unaware of the family’s dire situation.
The Gurneys immediately responded by encouraging the Brocks to seek assistance. Nancy Gurney told Gudrun: “You are part of a community — you have a school and a temple that does not know what is really going on. You have to come in, meet with your rabbi, explain what is going on, and get help.”
Immediately, Steven Leder, senior rabbi at Wilshire Boulevard Temple, put the Brock family in touch with Chai Lifeline, which helps families with seriously ill children. It provided them with moral support and assisted in finding appropriate therapists. Clarissa, Aaron’s 12-year-old sister, was given a scholarship to attend Camp Hess Kramer this summer. Parents within the school community began to pitch in with Mitzvah Meals three times a week.
“We, like a number of families in distress, had pretended we were OK and presented ourselves as a functioning family,” Gudrun said. “However, once the wheels started turning, we gained some of the assistance we really needed. People were actually doing things, unexpected things — donating tickets to Disneyland, inviting us to Shabbat dinner. But what impacted us the most was the moral support — the phone calls, the e-mails, the concern, the thoughtfulness, the appreciation for Aaron.”
The Brocks continue to do as much together as a family as they can. Among their favorite activities is cooking together. When Aaron is feeling well enough, he loves to cook meals with his mom. He loves his mother’s short ribs, and when he is able to eat, he wants short ribs at breakfast, lunch and dinner. Indeed, Aaron’s desire to eat remains, even though sometimes his body simply can’t retain the food. But when he can, he will eat even just a little bit. And, especially, he still loves the flavor of food.
Clarissa, too, joins in to help around the house and encourages her brother to eat. “He loves Factor’s skirt steak,” Gudrun said, adding that Suzee Markowitz, a co-owner of Factor’s Deli and a family friend, “is always happy when Aaron wants to eat it. Of course he loves Suzee, too,” she said.
Nevertheless, even on a good day these days, Aaron averages only 10 percent of his caloric intake from eating food. Yet, he loves to choose ingredients from the fridge and chop onions, peel cucumbers and saute vegetables. Sometimes he’ll wave his hands over a pot or pan, just to get a smell into his nose.
The situation is still dire for the Brock family. Gudrun notes that while the outpouring of help has been incredible, Aaron’s condition continues to be unstable, and the family’s financial situation remains very precarious; there is even talk of having to declare bankruptcy.
“It has come so far that things around us are falling apart. We have nothing left. We don’t know what the next day will be like,” Gudrun said.
Yet, through it all, the entire Brock family is looking toward the future. Gudrun hopes one day to use her experience dealing with a child with CVS to help others in similar situations. She said that just thinking about how she might help others keeps her motivated and inspired.
“I do know that Aaron came to us because he is here to teach us something,” Gudrun said. “I do believe that. I have learned a lot, and I am grateful. It has made me stronger. And Aaron is worth it. I would not do anything less, not a bit.
“And frankly,” she added, “there has got to be a time when things will be better.”