of it. I just happened to tap into one ophthalmologist in California who performed a survey, looking for a cause. He never actually found one, but he did find the uptick in patients who spent their early embryonic lives in Harris County. He believes something in the environment explains the defect. Mind you, most of the kids with ONH don’t come from Texas. It’s just a statistical thing.
“The upshot is Dallas has congenital abnormalities of his hypothalamus and optic nerves.” Susan did not get deeper into the brain technicalities. Some people with the syndrome also had certain missing septa in the brain, but Dallas did not.
Mrs. Moore guessed, “He has trouble . . . seeing?”
“That’s how it’s usually detected,” Susan said. “Hypoplasia is when things in the body don’t develop to their full potential. Kids with ONH are often blind. Most have poorer than normal vision; but a few, like Dallas, have normal or nearly normal vision. His optic nerves are smaller and thinner than usual, but they work just fine. The best part is the damage is done before birth. So, we have no reason to believe Dallas’ vision will get any worse.”
Susan gave the Moores time to digest this information.
After several moments of dense silence, Mr. Moore finally spoke again, “So, how does this apply to Dallas?”
Susan anticipated the question. “As I said, ONH is nearly always diagnosed by ophthalmologists because of vision problems. Ophthalmologists know children with ONH often also have problems with the hypothalamus. The lucky ones with normal vision, like Dallas, fall through the cracks. They present with the hypothalamic symptoms first, and they become extremely difficult to diagnose.” She hoped this would help the Moores understand why medical science had, thus far, failed them.
Mr. Moore still worked to grasp the greater significance of the syndrome. “So . . . Dallas’ obsession with food is not obsessive-compulsive or oppositional. And his depression?”
Susan thought she had a reasonable understanding of the situation based on talking to Diesel and reading the charts and the nursing notes throughout his hospital stay. “Oh, he’s depressed, all right. Deeply and severely. Among many other things, the hypothalamus regulates mood, and people with disturbances in hypothalamic function have
“Volcanic,” Mrs. Moore supplied.
“Yes.” Susan felt certain they had experienced many of Diesel’s explosions, probably since infancy. “Now, imagine you’re hungry all the time, day and night. You’re driven to eat. Tens of thousands of calories every day don’t satisfy your belly because, no matter how full your gut, your brain keeps telling you to eat or die.”
Mrs. Moore put her hands to her face. “Dallas feels like that?”
Susan did not answer, needing to continue her scenario until she made a specific point. “But you’re constantly being told that taking food is greedy and disgusting, and that fat people are undisciplined slobs. But you
Mr. Moore sat in thoughtful silence, rocking ever so slightly. Tears formed in Mrs. Moore’s eyes. “They told us he was just being . . . oppositional. Defiant. Fighting us for control.”
Mrs. Moore’s voice quavered. “One doctor said we didn’t love him enough. That he ate to fill the void.”
“Nonsense,” Susan reassured them.
Mr. Moore turned entirely practical. “So, what do we do?”
Susan had a plan all worked out for them. “First, we get you hooked up with an endocrinologist. I’m willing to bet Dallas would benefit from growth hormone and thyroid hormone replacement. He may need testosterone to go through puberty; and, even then, I should warn you he will probably be infertile.” Susan gave them time to process that information. Eventually, they would likely realize it did not matter. Given his severe lifelong problems with food, Diesel would never have the wherewithal to handle children of his own.
“Next, we hook you up with a security company that can go through your entire house and figure out how to secure any and all food-containing areas. You will need dependable locks on the freezer, refrigerator, garbage cans, and cabinets. Better yet, if you have an enclosed kitchen, lock the whole thing. We will have to work with the school as well and realize children with hypothalamic forms of obesity will take food wherever they can get it: stores, vending machines, other people’s plates, floor sweepings, dog food bowls.”
The Moores started talking at once, comparing memories of times when Diesel had raided places they never expected and had eaten items most people would never touch.
Susan let them converse. She had given them a whole new perspective on their son, and it would require them to turn their lives, and those of his siblings, upside down. Most people did not realize just how important and central a role food played in every social aspect of life until it became a problem.
When the Moores seemed ready, Susan continued. “Dallas will feel most secure when he has no personal access to food, when people he trusts fully control his access to it. If he tests the locks and finds them wanting, he will continue to work on them anxiously. If he tries and fails, he will become a much calmer person knowing his life, and his appetite, are controlled by a higher authority: his parents and doctors. We will make him up a diet and stick by it rigidly. Dallas must know he will be fed, at regular times and in predictable and consistent amounts. Food can never be used as reward or punishment, nor can it be present anywhere he is expected to concentrate.”
“And when he does steal food again?” The mother’s question left no doubt it would happen.
Susan shrugged. “We understand it’s caused by biology, not disobedience. Talk about the incident in the context of keeping him safe and healthy rather than as a terrible or criminal act. You may need to involve other people: neighbors, his friends’ parents, your church, and, of course, the school. Dallas may need a full-time aide to watch him if all of you together can’t keep him safe.”
Susan knew the parents needed time to process the vast amount of information she had dropped on them. “You can stay here as long as you want. When you’re ready to leave, let the nurses know so they can unlock the doors. By then, you may have more questions. Don’t hesitate to ask for me, Susan Calvin.” She turned to leave, stopped by another question from Diesel’s father.
“Dallas will come home soon?”
Susan turned back to face them again. “As soon as Endocrinology sees him, a dietitian writes a plan, and your home is secured. We will begin the transition immediately. When we change our approach to him, I believe he will respond quickly. In the meantime, we need to have your house and family fully prepared.” With that, Susan headed out of the room and down the hallway, preparing for the rest of her day. During rounds, she had outlined her plans for Diesel, and the nurses had shown support. Susan had already spoken with Diesel, preparing him for the many changes. No longer would anyone berate his willpower or damn him for stealing food; those things would not work. From now on, they would become a team, working together to find ways to make his difficult life longer and better.
Mr. Moore called down the hallway. “One more thing, Dr. Calvin.”
Hand on the locked door to the unit, Susan turned.
“We’ll need someone to coordinate all his care, someone he knows and likes. Would you do that for us?”
Susan thought the job better handled by a general pediatrician, but she recognized the honor inherent in the question. She had found the answer so many others had missed, and they trusted her. Dallas was her first breakthrough, special for that as well as all his other issues. On a more selfish level, she realized she needed to know what happened to him from this point on. “I’d be thrilled,” she replied.
Chapter 7
Susan chose to lunch alone, heading to the hidden charting room that had served as her on-call hideaway. She took her lunch and her palm-pross, dropping them on the central table in the cozy nook, but her real reason for coming was to find Nate. She sank into one of the unmatched chairs and opened her reusable lunch sack. Her father had packed her favorite: peanut butter on twelve-grain bread. She removed it from its container, took a bite, and chewed thoughtfully, studying the modular shelving, the well-worn textbooks, the computer-processing units, and
