Mother, interrupted: CPS accused her of everything from neglect to excessive care, never proved anything, and took her daughter anyway

After the ER trip, there weren't many more visits to the doctor, outside of vaccinations and the occasional call for advice. Dunlavy joined three parenting groups and enrolled Sarah in all kinds of classes: swimming, music, Little Gym.

But the problems with acid reflux and feeding that surfaced when Sarah was a few weeks old persisted. She had trouble gaining weight, though she continued to grow taller. In December 2006, when Sarah was 17 months old, her pediatrician referred her to a pediatric gastroenterologist at St. Joseph's Hospital, to help manage her acid reflux.

A couple of months later, other problems emerged. Though she was a year and a half old, Sarah said only three words, total. (By this age most children ask simple questions and form short phrases like "What's that?" or "No more.") She didn't close her mouth, causing her to drool constantly, and she had a hard time getting along with other kids. An instructor in one of Dunlavy's parenting groups suggested she have Sarah evaluated by the state's early- intervention program, designed to provide services for children under 3 who have a chance of winding up with developmental delays.

She followed the advice and, in March 2007, an evaluation indicated that, indeed, Sarah had significant developmental delays with regard to speech and feeding.

According to the state, Sarah needed therapy to prevent permanent problems. Dunlavy jumped right on it. Now she wonders whether she should have.

"They told me there was stuff wrong and I did everything I could to fix it," she says. "There's no way of winning. If I hadn't taken her to the therapies I would have been charged with what? Neglect. I take her to the therapies and what do I get charged with? Neglect."

But according to the therapists who evaluated Sarah, Dunlavy did the right thing. Between March and June of last year, Sarah was evaluated by speech pathologists and occupational therapists at six different agencies, including Phoenix Children's Hospital, and Effecti­Com, an agency run by highly regarded speech pathologist Robin Rudin.

Every report mentioned Sarah's low muscle tone, expressive-language delay, and feeding problem. Every therapist recommended six months to a year of therapy to resolve the problems.

Dunlavy was getting Sarah's five hours a week of therapy paid for by the state, and her mother helped her finance three more privately funded hours a week. She also set up a playroom in her house modeled after what she saw her daughter doing in occupational therapy.

"I can't tell you how many of those therapists told me the objective was to get the child okay by the time she started kindergarten," she says. "You know you have a window and you do everything you can."

Later, when Dunlavy was charged with "excessive care," the hours of therapy and the home playroom came back to haunt her. Though the state mandated, via DDD, that Sarah receive therapy, the state also later said, via CPS, that it was too much, a point that Dunlavy finds especially confusing.

"The therapy I got that was extra was because it was helping and she was getting better," she says. "I didn't want her to get picked on or end up with a speech difficulty. It wasn't like she was being electrocuted — it was speech therapy."

Trudy Norman-Murch (who does not know Dunlavy or the details of this case) is the director of services for children with disabilities at Southwest Human Development, an agency that contracts with the state to provide therapy services. She says it's impossible to say how much therapy is too much — it depends on the child — but early intervention is key.

"Children need a lot of practice and the job is to help the parent figure out natural opportunities," she says. "The speech pathologist isn't going to be there to feed your child every day. The goal is to figure out what strategies will help and use them every day."

And it's not unusual for a child to wind up in therapy these days. Michelle Macias is the director of developmental-behavioral pediatrics at the Medical University of South Carolina and chair of the American Academy of Pediatrics' developmental-behavioral section. She says there has been an increase in the number of children under 3 who receive some kind of therapy since 1987, when a federal early-intervention law was passed requiring states to set up programs like Arizona Early Intervention Program.

"We know it has increased. There's no question about it," she says. "It's increased because of better detection. The earlier you detect, the earlier the intervention, the better the outcome. The therapists are helping them to prevent bad patterns from developing."

Macias says those bad patterns are especially common in children, like Sarah, who have feeding issues — they can simply forget how to eat, especially once they get a percutaneous endoscopic gastronomy feeding tube — or PEG tube — such as the one Dunlavy was trying to avoid. According to Macias, a lot of confusion surrounds feeding problems, partly because they are subtle, partly because not enough research has been done on them.

But there's no doubt about it — more kids just like Sarah are in therapy than ever before. And it's sanctioned (and paid for) by the government.

"People think, 'Well, they'll just learn to eat.' You would be amazed at how fast kids who have feeding problems lose that ability," she says. "It doesn't automatically get better at all. You really have to start early with feeding issues. No question about it."

Sarah began to improve. Her speech was getting better, but her eating was still irregular.

"[She] tends to panic easily and will reject a food rather than sitting down and figuring out how to work with the food," speech therapist Robin Rudin wrote in June.

Her projectile vomiting had stopped, and Rudin thought that might be linked to her failure to gain weight.

"Mom has noted that [the child's] decline in appetite seems tied into her decreased reflux. It appears possible that [the child] has learned that her stomach feels better if she doesn't eat. Now that she eats very little she does not have trouble with vomiting," Rudin wrote in September.

This theory was never fully explored. Instead, worried that his patient gained only one pound between December 2006 and September 2007, the gastroenterologist suggested Sarah might need a feeding tube. The procedure places a PEG tube in the patient's stomach, allowing liquefied food to go directly into the body. The surgery can be performed two ways — through the mouth, using an endoscope to guide the tube to the stomach wall, or by surgical insertion of the tube through the skin.

Dunlavy was horrified.

"I didn't want the PEG in my child," she says. "I wanted to try everything else, I wanted [a more intense] feeding therapy program."

In an effort to avoid the tube, Sarah underwent minor surgery in early September that clipped the skin underneath her tongue. Before the surgery, it extended farther than normal, restricting her tongue's motion. The clip was performed by Dr. John Raines, who noted he didn't think it would help her gain weight and suggested Dunlavy talk to a friend of his, gastroenterologist Mitchell Shub at Phoenix Children's Hospital.

Dunlavy visited Shub on September 26 to talk about the feeding tube. She was still hoping to avoid it, but Shub thought Sarah was a good candidate for the PEG.

In his report, Shub writes, "I believe that placement of a percutaneous gastronomy feeding tube would be helpful in maintaining good nutritional support."

He spent 75 minutes urging Dunlavy to agree and suggested the child could be evaluated as an inpatient first. She remained unconvinced but agreed that an evaluation might be a good idea.

The report was sent to Sarah's pediatrician, Kevin Berger.

The family was new to Berger's office. Dunlavy had switched primary-care physicians in August because she'd heard he had a good reputation working with DDD clients. She was hoping he'd be able to guide her through Sarah's difficulties and help her get things like Pediasure — one of the child's main sources of nutrition — paid for through her insurance. They met for the one and only time at a new patient evaluation.

Dunlavy liked Berger. She describes it as a basic appointment. Sarah sang her ABCs and pointed out colors on the wall.