Susan Chen is missing. The mom lost custody of her autistic son, then got him back

It was just after midnight at Seattle Children’s Hospital, and Susan Chen’s 3-year-old son was not well.

His weight was fluctuating and his belly was swollen. And so, on that cool night in October 2013, Chen found herself in a fluorescent-lit emergency room, anxious, despite a doctor’s visit the day before.

The Chinese immigrant, homemaker, and mother of two had moved to Redmond with her husband, who had been hired at Microsoft. Their first child was healthy, but their second was not, and around the time of his second birthday, Chen’s life became consumed with visits to endocrinology specialists, gastroenterology clinics, and pediatricians.

Chen was unaware that doctors had concerns of their own. Doctors believed the boy was suffering from failure to thrive – which meant the toddler wasn’t gaining enough weight. A doctor with Mercer Island Pediatrics told others he believed Chen had Munchausen by proxy, and that she may have intentionally caused her son’s sickliness.

“Mom flits about, gets child seen, and then has no follow-up,” he wrote. Also alarming to him was that the boy had seen 14 doctors in two years, and had two primary care doctors.

And then, a cascade of events: A doctor called the state; the state took custody of the boys; police investigated. Prosecutors charged Chen with criminal mistreatment in the second degree, saying she withheld food from her child. They did not appear to know, based on medical records, that a doctor in Oregon was the one advising the child’s diet.

Chen’s older son returned to her first, and the baby came home nine months later, when it became clear that he wasn’t thriving with foster families, either. Chen was cleared of criminal wrongdoing.

That was six years ago.

Last month, Susan Chen went missing...

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usan Chen’s case is unusual; rarely are parents criminally charged for withholding food from their kids. Prosecutors say it has happened roughly three other times. Her story has also taken an unexpected twist: The mother who fought relentlessly for her child then disappears, seemingly into thin air.

The last time anyone saw Chen was on Friday, Jan. 10, the day after a judge quashed Chen’s attempt to sue for damages. The judge had ruled this way not based on the details of Chen’s case, but because of legal technicalities.

Angie Hugeback, a friend of Chen’s said Chen was suing the state to cover future costs of caring for her son.

“She was hoping to be able to pay for (her child’s) care, because he needs intensive care,” Hugeback said. “He’s going to need care his whole life.”

Her younger son is 9 now, and severely autistic.

He “cannot speak, cannot use the toilet by himself,” Chen said in May, when this reporter worked for Sound Publishing. “Before (he was) removed, he had all these abilities.”

Chen sounded panicked over the phone and became frustrated when this reporter did not immediately understand the complexities of the case. Chen had written her own press release to undo what she called an injustice.

Twyla Carter, Chen’s former public defender, was the main actor in the dismissal of Chen’s charges six years ago. Today she works at the ACLU national office in New York City, but has stayed in close touch with Chen through every step of the process.

“What happened to this family is wrong,” Carter said. “I actually read everything. I saw the evidence against her and know she is innocent and should have never been in the criminal or civil legal systems. It is unbelievably devastating to endure the harms that this family has endured and nobody is held accountable.”

Prosecutors ultimately dismissed criminal charges against Chen because they could not prove that Chen had intentionally harmed her child. The toddler’s weight fluctuated in foster care as well, and multiple caregivers spoke out on Chen’s behalf.

Proving a Munchausen by proxy case requires showing that a child improves outside a parent’s care. But the boy did not improve.

An occupational therapist, Brooke Greiner, wrote to the court in defense of Chen, saying she believed the toddler should be returned to Chen.

“He continues to have severe symptoms of a complex eating disorder,” Greiner wrote. “He has extremely long days of program, therapies, bus rides, visitations. [His] parents provided him loving care, obtained professional advice and therapies for him while he was in their care. They continue to do so while he is in foster care."

In court records, a public defender for Susan Chen said that Quinn told her he did not believe Chen was starving her child and that he did not have all of the needed information before making his prior assessment.

So where is Chen? Angie Hugeback and others worry that Chen may have taken her own life. They say that she had likely reached a point of total exhaustion, and that the Jan. 10 ruling took its toll.

Meantime, the clock is ticking for her to return. As of this writing, there is little more than a week to appeal judge’s decision to dismiss her case.

"D

ear Mom, I miss you! Please let me know you are safe. It is the system that fails you, please do not give up hope!”

This tweet was posted online on Jan. 11 by someone purporting to be Susan Chen’s older son, who is 12 or 13. The Twitter account was set up in January 2020.

Tweets of this nature continue to be posted from the account @LionINforest.

There is also a missing person flyer posted on social media. “Help bring Chen Chen home,” it reads. “Last seen on January 10, 2020 at Seattle King 5 TV station building, wearing (a) white sweater.” Her description is provided: age 40 plus, brown eyes, black hair, 5-foot-3-inches, 100 pounds.

But other than that, radio silence from the family.

No missing person report was filed as of a week ago in Washington state, although Chen's estranged husband told friends that he had spoken with police.

He would not respond to requests for comment. His attorney, Mike Myers, said the father informed him that Chen had disappeared.

By email, Chen’s estranged husband asked KUOW not to name him. He said he worries his older son would be bullied, but he also said that his son is already being bullied, and that kids call him “CPS kid.”

Although he would not speak with KUOW, he has spoken with attorneys who say he is scared that police would take away his and Susan Chen’s boys again, and that he is traumatized by what happened six years ago.

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hen and her ex-husband were without their sons that weekend in October 2013, after their visit to Seattle Children’s Hospital, but Chen showed up to a custody hearing optimistic that she would get them back. She had hundreds of photos with her that day, her friend Hugeback said. Hugeback remembered going through the stills as Chen waited for her case to be called in court.

“She brought a whole big box of photos that captured Halloween costumes and birthday cakes, to show they’re really good parents and taking care of the kids,” Hugeback said.

Quickly, Chen’s mood went south as the judge ruled to keep Chen’s children in custody.

“It was just devastating,” Hugeback said. “I remember Chen … just screaming. It was just terrible. They were just hysterically crying ... someone just told (them) the worst thing you could possibly hear. They were just desperate and in this terrible pain.”

Heather Kirkwood, a retired attorney, met Chen two months after the state took custody of her baby.

It was her understanding, Kirkwood said, that the judge decided to keep the child because he had gained some weight while admitted to Seattle Children’s. The judge wanted to see if the boy’s condition would continue to improve.

In 2012, Chen became aware of her 2 year old’s challenges with social engagement and communication. Chen was given a diagnosis she wasn’t looking for: autism spectrum disorder.

“When she was told that (the child) was autistic, that was very difficult for her to accept,” Kirkwood said. “Autism is simply not an excuse in China. It must be the fault of the parents. Your job is to raise confident, successful children.”

At first it seemed as though Chen rejected the autism diagnosis, Kirkwood said. Then she decided to learn everything she could about autism and use every possible treatment to give him the best life possible.

There’s nothing in the medical record to suggest that the doctors at Seattle Children’s treating the child in 2013 knew about the autism diagnosis or the child’s many other physicians.

An Oregon doctor had previously recommended that Chen place her child on restrictive diets, to locate what could be causing the child’s gastrointestinal problems and improve autism symptoms. The doctor, John Green, is a vaccine skeptic who supports unorthodox treatment methods; he advised Chen to cut out rice, potatoes and sweet potatoes and instead offer her son a diet of meat, vegetables, fruit, honey, eggs, nuts and certain beans.

On this type of diet, it would be harmful for someone to eat starches, gluten and table sugars, he told the court during an October 2013 hearing.

That Green made this recommendation did not reach Redmond police, who wrote in charging papers that Chen withheld nutrition from her son without doctor's orders.

“All other causes of the child’s condition aside from malnutrition had been ruled out,” police charging papers read. A Redmond detective wrote that Chen restricted her child from "eating many things, including carbohydrates, although she was never told that (her child) could not have carbohydrates by any doctor.”

Chen and her family argue that police received Dr. Green's medical records prior to filing the probable cause affidavit, and that Children's doctors ignored the child’s medical records and failed to consult with the child’s main treating physicians.

Over the course of nine months, the toddler was placed into eight different foster homes. Chen said he was allowed minimal contact with his family and his autism therapy was inconsistent.

“(The doctor) reported that the parents came to see him last week and were very concerned about (the child) continuing to receive the services he had been participating in prior to removal,” case notes from Dec. 10, 2013 read.

That same month, a case manager reported that Chen paid a visit to see her son at ChildHaven, a nonprofit that offers therapeutic childcare.

“(The child) was not responsive to his mother … the mother appeared upset and stated that the child is regressing ... (The case manager) informed the mother that she can visit at ChildHaven up to two times per week. The mother requested more and was informed that two times per week would be the limit at this time.”

Although the child gained weight initially while at Seattle Children’s, foster parents and daytime caretakers began to report the same issues that Chen was seeing. The child would often reject food, as outlined in dietary notes, and his weight began to fluctuate again.

"Out of respect for privacy, we do not share information about specific patient cases. The health and safety of our patients is Seattle Children’s highest priority, and we support Seattle Children’s staff who are required by law to report suspected abuse or neglect," said an email from Lindsay Kurs, spokesperson for the medical center.

A medical expert on child abuse told KUOW that it’s hard to know for certain what leads a child to become severely malnourished and if a parent is to blame. The expert said to look at objective data when making a determination.

The growth of the child, the mental health of the parent, the relationship between the parents, therapies and treatment are all things to consider when searching for the cause, said the medical expert, who asked not to be named because of their affiliation with Children's, a defendant in Chen's lawsuit. It’s also important to see if the child’s condition improves, after they’re placed in state care.

Today it remains unclear to prosecutors if Chen was intentionally harming her 3-year-old son, or if her decision to withhold carbohydrates and other foods were based on guidance from an unorthodox doctor, paired with a mother’s strong will to heal her child.