Jaxen Steimlosk started having serious health problems a few months after he was born. He was wheezing, choking on small amounts of liquids, and even stopped breathing at times. His doctors agreed he had a medical condition, though they struggled to determine what was causing his symptoms.

In September 2018, when he was 3, surgeons at Boston Children’s Hospital inserted a feeding tube into his abdomen, part of the latest effort to diagnose him. He already lived with a breathing tube. A week later, back home in North Yarmouth, his mother, Cassie, and an in-home nurse noticed that the tube sites seemed infected. Cassie called the family pediatrician, but he couldn’t see Jaxen until later in the day, so Cassie drove her son to Maine Medical Center.

But the hospital staff did not treat Jaxen. After speaking with the family pediatrician, they sent him home.

The pediatrician, whose records show that Jaxen had serious medical issues, began to suspect that Cassie was subjecting her son to unnecessary tests and treatments. Jaxen’s records show that his pediatrician told the Maine Med doctors he suspected Cassie had Munchausen syndrome by proxy, a psychological disorder in which caregivers – usually mothers – make up illnesses to get attention. The condition is commonly referred to as “medical child abuse.”

Why Jaxen’s pediatrician came to this conclusion after treating his medical problems for more than two years isn’t clear. But soon several other health care professionals began raising similar concerns about Cassie. The standoff culminated in a lengthy state investigation and a custody battle in which the state tried to take Jaxen away from his parents.

A Portland Press Herald/Maine Sunday Telegram examination of hundreds of pages of medical records and investigative reports provided by the Steimlosk family — records that are rarely made public — reveals that the state’s inquiry was deeply flawed from the start. State workers concluded that Cassie was abusing her child only days after launching their investigation and aggressively worked backward to prove their case. They focused on the most damaging information and ignored evidence in her favor. Two experts that the state consulted decided Jaxen was being abused without ever meeting him or his parents, violating best practices.

Jaxen’s case illustrates what can happen to parents of a child with complex, undiagnosed medical problems whose doctors can’t agree on treatment. Most states, including Maine, do not separate instances of medical child abuse from all child abuse, so there is no accurate way of knowing how often these types of investigations happen, but experts say parents like Cassie, who are proactive in trying to get answers, are often the first to spur suspicion. Compounding the situation are intense scrutiny over how Maine protects vulnerable children in the wake of two children’s deaths and strict rules around “mandatory reporter” laws, which require certain professionals to report any suspicions about abuse to the state, even if they are not convinced a child is being harmed.

Jaxen Steimlosk’s mother, Cassie, uses a syringe to remove excess air from his stomach through his gastronomy tube after he ate several ounces of liquid food mix. Ben McCanna/Staff Photographer

A judge ultimately decided Cassie did nothing wrong and dismissed the state’s attempts to remove Jaxen from his home. But the monthslong ordeal drained Cassie and Tim Steimlosk emotionally and financially. They wanted to share their story in hopes of sparing other families similar suffering.

“The damage is life-altering,” Cassie said. “It’s difficult not to let the pain consume me.”

None of the health care professionals or child protection workers involved in Jaxen’s case would speak to the newspaper, even after the Steimlosks signed letters waiving their privacy. State officials said they were prohibited by state and federal confidentiality laws from discussing the case.

Dr. Eli Newberger, a Boston pediatrician who is a leading expert on medical child abuse, reviewed Jaxen’s case and wrote in a report that the family was “grievously harmed” by Maine’s investigation.

“Never previously have I witnessed such a rush to judgment, a defamatory campaign against a mother and her family in a community,” wrote Newberger, who was hired by the Steimlosks’ attorney and was prepared to testify on their behalf. “The paucity of interest in seeking the truth of the matter is jaw-dropping.”

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Jaxen was born May 23, 2015, brother to Madison, now 14, Jonas, 12, and Ever, 9.

His birth was uncomplicated, but within a few months his parents started to notice things. The high-pitched wheezing sound he sometimes made. The way he choked on small amounts of liquids and, later, solid food. The scariest symptoms were the blue spells when he would stop breathing.

One day in February 2016, while the whole family was battling the flu, Cassie was consoling Jaxen. He was warm, and she placed him on the cool tile of the kitchen floor at her feet. A few minutes passed before Cassie had a sinking feeling. Jaxen was motionless and not breathing. She frantically tried to see if anything was in his mouth. She slapped his back. She panicked.

Her husband had come into the room as Cassie shouted, “Call 911!” His hands trembled so much that Cassie had to make the call. As soon as a dispatcher picked up, she cried into the phone: “My baby is dead!”

By the time rescue personnel arrived, Jaxen had resumed breathing, but he was transported to the hospital for observation. He stayed for more than a week, but doctors couldn’t tell what was wrong.

After that hospitalization, the Steimlosks’ longtime pediatrician, Dr. Paul Ritger of Intermed Pediatrics in Portland, suggested Jaxen see a pulmonologist, a respiratory system expert.

Jaxen Steimlosk, 4, has dealt with complex medical issues most of his life. Ben McCanna/Staff Photographer

No specialists were available in Maine, so the Steimlosks sought one at Massachusetts General Hospital in Boston, who assessed Jaxen and noted both inspiratory stridor (airway disruption) and cyanosis (low oxygen in blood). The pulmonologist made an immediate referral to Dr. Christopher Hartnick, an ear, nose and throat specialist who admitted Jaxen to Mass General. The boy was there for another week under observation and testing but still didn’t have a clear diagnosis.

Ritger’s records showed that Jaxen had severe neonatal episodic laryngospasm and possibly a genetic metabolic/neuromuscular disorder. The diagnosis fell under the umbrella of muscular dystrophy and was coded as such for insurance purposes many times. Records are clear that Ritger believed Jaxen had a severe medical condition.

Excerpt from an August 2016 memo by Jaxen Steimlosk’s pediatrician showing that he has referred the boy to specialists in Boston.

One doctor who observed Jaxen wrote, “Patient remains critically ill with life-threatening cyanotic episodes not completely characterized yet but likely due in large part to vocal cord dysfunction.” That dysfunction affected his breathing and caused food and liquids to go into his trachea and lungs rather than his esophagus to the stomach.

Hartnick told the family he would exhaust all options but warned that “if all else fails and the symptoms persist, he may need (a) tracheostomy.”

Ten months later, Hartnick concluded that a breathing tube was “an aggressive diagnostic step,” but without it they may never get a handle on Jaxen’s breathing problems. The Steimlosks agreed.

On March 6, Hartnick surgically placed Jaxen’s tracheostomy tube. He was in the hospital for nine days. During that time, Cassie and Tim, and Jaxen’s primary home health nurse, Deb Regan, were trained on how to change the breathing tube and to look for signs of infection.

Jaxen’s breathing improved, but other symptoms persisted. He started to develop balance problems and headaches. He still had trouble eating and wasn’t gaining weight, so fatigue and muscle pain were common. Cassie has videos of him dragging himself around their home by his elbows because his legs were tired.

Cassie Steimlosk feeds Jaxen a blend of turkey, sweet potatoes, peaches and more through a gastronomy tube. Ben McCanna/Staff Photographer

Doctors recommended additional genetic testing, possibly for a mitochondrial disorder. Mitochondria exist in most cells in the body to produce energy. When the number or function of mitochondria are disrupted, less energy is produced, which can affect organ function.

Cassie and Tim didn’t want their son to have a breathing tube any longer than was necessary. In May 2017 and again in October, emails and phone records show, Cassie contacted Hartnick about a plan for removal. He said he wanted more tests.

“(We) cannot make a plan … until we know what underlying neurological issues are happening,” Hartnick wrote.

Jaxen was referred to four neurologists between Mass General and Boston Children’s. One told Cassie she thought Jaxen was a normal, healthy child who would be well within a few months, an opinion Cassie bristled at. Another wrote to Hartnick that testing should stop.

“(I) think at this point the diagnostic odyssey needs to end and we need to focus on improving his overall quality of life with physical and behavioral therapies,” the doctor wrote.

For children with rare diseases, the average length of time before a diagnosis is found is five to seven years. Jaxen hadn’t yet turned 3. And Ritger, the family pediatrician, had concluded in 2017 that Jaxen’s “chronic, incurable disease can best be characterized as a congenital metabolic defect that affects the ability of nerves and muscles to coordinate efforts, causing paradoxical episodic paralysis.”

Hartnick sought yet another opinion from a gastroenterologist, Dr. Eitan Rubenstein at Boston Children’s, who concluded that Jaxen would benefit from a gastronomy tube “to both improve his nutritional status and also to prevent him from aspirating further.”

The feeding tube was placed Sept. 12, 2018. Ritger initiated referrals for the surgery, records show, even though he would later tell Maine Department of Health and Human Services investigators that he wasn’t consulted.

◊ ◊ ◊ ◊ ◊

Two days later, unbeknownst to the family, Ritger initiated what’s called a patient aligned care team and put himself in charge. He appeared to want to become more involved in Jaxen’s care, which was provided almost exclusively in Boston by then. But Jaxen’s medical records don’t show any contact between Ritger and the boy’s Boston doctors from that point.

Ritger did intervene, however, when Jaxen arrived in the emergency room at Maine Med on Sept. 19 with a potentially infected breathing tube site. Ritger told doctors to send him home untreated because he had developed concerns about Cassie exaggerating the boy’s symptoms. “There is some suspicion of Munchausen by proxy,” reads a Maine Med record of that visit.

Excerpt from a medical record documenting a September 19, 2018, emergency room visit showing that Jaxen Steimlosk’s pediatrician told doctors he suspected Jaxen’s mother of Munchausen by proxy, or medical child abuse.

Cassie, confused and angry but unaware of Ritger’s suspicions, contacted Hartnick’s office, which advised her to drive to Mass General. An emergency room physician there noted that “he has some thick secretions around his stoma which are foul-smelling, concerning for tracheitis.” He was prescribed antibiotics.

A week later, Cassie met with Ritger to ask why Jaxen was denied care. He told Cassie he was concerned Jaxen might have a diminished quality of life, which prompted Regan, the home nurse, to defend Jaxen’s care and the family’s efforts.

Despite his concerns, Ritger continued approving measures, including an insurance request on Oct. 17, 2018, for a whole house generator system so Jaxen’s oxygen and feeding pump could function even if the power went out.

Other doctors continued to be concerned about Jaxen’s worsening symptoms.

In November, one of the neurologists at Boston Children’s evaluated Jaxen and concluded that his strength and stamina had worsened since his last visit. He suggested that “further investigation into the possibility of a mitochondrial disorder is in order.” Cassie had gotten the same opinion remotely from a genetic specialist in Atlanta who reviewed Jaxen’s records, another step that would raise suspicions later.

Jaxen plays with a toy car on the kitchen floor. Ben McCanna/Staff Photographer

Over the next several months, the family had little contact with Ritger. Cassie and Tim managed Jaxen’s care mostly through providers in Boston, which required travel and cost money.

Tim is a high school math teacher in Gray and a former electrician who still does electrical jobs on the side to help pay bills. Cassie ran a day care out of their previous home in Raymond for many years and is now a stay-at-home mom. She just finished going back to school to become a licensed practical nurse.

Two years ago, Cassie was the lead plaintiff in a lawsuit asking courts to force then-Gov. Paul LePage to expand Medicaid, which voters had approved through referendum. Under expansion, the Steimlosks would be eligible for benefits that would offset some of Jaxen’s medical costs.

In March 2019, Tim requested Jaxen’s medical records because the couple were frustrated by Ritger’s silence and wanted to find another pediatrician. Ritger later told investigators that he had been concerned “for years” about Cassie but also said he dropped the family because they disagreed with his recommendation that one of their other children should receive behavioral health services.

“It was the straw that broke the back,” he said.

A week later, the family got a letter from Ritger’s office informing them that Intermed would no longer provide care to any of the Steimlosk children, citing a “nontherapuetic relationship” that had developed. It did not provide any specifics.

The family found a new office, Harbourside Family Practice, in Yarmouth. But a month later, that office informed them that they couldn’t see Jaxen because Ritger had told them Cassie suffered from Munchausen by proxy, and that created liability for the practice, Cassie said.

Ritger declined to be interviewed for this story, but InterMed’s chief medical officer, Dan Loiselle, said the practice supports him.

“Over the course of his 35 years of practice he has cared for thousands of children from throughout Southern Maine,” the statement read. “Dr. Ritger consistently receives extraordinary feedback from families about the quality of his care and the compassion he shows his patients. Those of us who know him and practice with him can attest to these qualities and more. I am confident that all of Dr. Ritger’s patients are receiving exceptional care.”

Cassie didn’t know what to do. She vented to one of Jaxen’s home nurses, Michelle LaRue, with COR Health, who had been working with the family only a short time. She also told her therapist, Beth Andrews, about Ritger’s allegations. Andrews, Cassie said, told her to be transparent with Jaxen’s doctors in Boston. So she was.

She called Hartnick and the pulmonologist at Mass General who had been most involved in Jaxen’s care.

But neither called back. Instead, Cassie heard from Dr. Laurie Glader, a complex care coordinator at Boston Children’s. She left a message with Cassie asking her if she could bring Jaxen down the next day, June 7.

Cassie and Regan, one of Jaxen’s nurses, left Maine before dawn and arrived at the hospital by 8 a.m. They met with Glader and a hospital social worker.

Cassie and Regan said the meeting was aggressive and accusatory. The bulk of the questions were variations of: Was Jaxen really experiencing these symptoms that kept him coming back to the hospital?

Or was Cassie making them up?

“I left in tears,” Cassie said. “I thought they were going to help get me a new (pediatrician).”

It was clear after she returned from that meeting that Cassie was under scrutiny in Massachusetts. What had Ritger told them? she wondered.

She again talked to LaRue, the home nurse, and Andrews, the therapist, about her experience. She also talked to other mothers of medically complex children, who suggested she get an attorney. One of them recommended Beth Maloney.

Maloney, who lives in Kennebunkport, has been involved in many child protection cases, both as an attorney and as guardian ad litem, including cases of “medical kidnapping,” where state officials remove children because of suspected medical child abuse only to be proven wrong. She also has her own history of raising a medically complex child and could see what Cassie was going through.

Maloney was brought up to speed, but things started to move quickly.

Attorney Beth Maloney, in her Kennebunkport home office, with binders containing documents used to defend Cassie Steimlosk against accusations of medical child abuse. Gregory Rec/Staff Photographer

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On June 14, 2019, both LaRue and Andrews reported suspected abuse of Jaxen to DHHS, which started a formal investigation. Neither appeared to have concerns until Cassie told them about what had happened in Boston the week before.

Andrews said she felt it was appropriate to alert DHHS as a mandated reporter but also “wanted it documented that she is very ambivalent about filing this report.” Her report was initially screened out, or not sent for an assessment, records show and wasn’t brought back until LaRue’s report came in.

LaRue told the state what Cassie had disclosed about being accused of Munchausen by proxy by doctors in Boston. She also said she thought Cassie was not telling the truth by characterizing Jaxen’s condition as muscular dystrophy because she had never heard that term used in the home. Medically, muscular dystrophy is an umbrella term for a host of conditions rather than a specific diagnosis. Jaxen’s diagnoses clearly fall under that umbrella, even if the cause is unknown.

LaRue later detailed to caseworkers about a time she saw Cassie changing Jaxen’s feeding tube and noticed she used sterile lubricant instead of water to inflate the tube. Cassie said that’s a method parents sometimes use to extend the life of the tubing, which deteriorates over time. LaRue saw it as a red flag.

In short order, a DHHS caseworker assigned to the case, Laura Landry, sought advice from Amanda Brownell, a child abuse pediatrician at Spurwink in Portland. DHHS contracts with Spurwink for expert consultation on child abuse and neglect. Landry also reached out to Alice Newton, a leading but polarizing child abuse expert at Mass General. Both concluded before ever meeting with the family or doing any investigatory work that Jaxen was a victim of medical child abuse.

The state’s investigative log shows that Landry and her supervisor, Darcie Lombard, worked to prove that early conclusion.

The Steimlosks authorized Maloney to share medical records with the state, confident they would show how diligent they’d been in seeking a diagnosis that had been so elusive and in ensuring Jaxen received the best care. Cassie and Tim were brought in on June 20, with Maloney, to meet with investigators. All three said it was clear the state wasn’t interested in what they had to say. They already were preparing investigative subpoenas, even as Maloney warned them that this could destroy Jaxen’s care.

When Landry contacted Ritger, he said he’d been concerned about Cassie “for years,” and appeared to be annoyed that the family sought alternative medical opinions.

Jaxen Steimlosk has a pillow fight with his 12-year-old sister, Madi. Ben McCanna/Staff Photographer

“Jaxen has been treated like a medical novelty,” he told the caseworker.

With Brownell and Newton’s help, the state developed a plan: It would take custody of Jaxen, remove him from his home and admit him to Mass General. There, doctors would remove the tracheostomy, then the feeding tube, then observe him for two weeks, maybe more. If he improved, they surmised, their suspicions would be correct – that Jaxen did not need those medical procedures. It would prove to them that Cassie was using the medical system to abuse her son.

But none of Jaxen’s specialists ever recommended those steps, and not one of them, all mandated reporters, ever filed a report in Maine or Massachusetts.

The petition for protection order was filed Aug. 27, 2019, and state officials seemed sure it would be approved. Brownell even contacted Maine Med to say that Jaxen would show up there before going to Boston and that his parents were not allowed to see him.

In the petition, the state accused the parents of initiating “ongoing unnecessary and harmful medical procedures for their son,” and said Cassie’s “behavior has progressed in a manner that fits the definition of medical child abuse (Munchausen by proxy).”

The caseworker’s supporting affidavit says, “Almost all of his medical issues have been reported only by the mother,” an assertion that is not supported by records.

The petition also prominently cites Newton’s role, even though Newton acknowledged that she performed only a “cursory review” of records. Newton claimed that many of Jaxen’s symptoms were “not credible” and said the breathing and feeding tubes were “due to Mrs. Steimlosk’s instigations and her falsely reported observations of Jaxen’s medical symptoms.” Newton’s contention appeared to be that a mother somehow persuaded two surgeons to perform serious operations on a small child that were unnecessary.

The Boston expert has been involved in several controversial cases in which her conclusions of child abuse were reversed, including the case of Justina Pelletier, a teenage girl with difficult-to-diagnose medical problems who was removed from her parents in 2013 on suspicion of abuse and kept hospitalized for 16 months. The state and the hospital were forced to drop the case and the family of Justina Pelletier later sued. That trial got underway this month.

A spokeswoman for Mass General defended Newton’s role.

“The state also has an obligation to investigate concerns of medical neglect or abuse when reported by a mandated reporter or anyone else who has good-faith concerns for the well-being of a minor,” said McKenzie Ridings, senior public affairs officer.

Less prominent in Landry’s affidavit were the thoughts of Regan, the nurse who spent the most time with Jaxen, and Hartnick and Rubenstein, the physicians who performed Jaxen’s surgeries.

According to the narrative log of the investigation, Landry asked Regan if she ever had cause for concern: “I think he’s getting the medical care he needs,” Regan said, adding that the feeding tube helped immensely.

Also absent in Landry’s affidavit was this statement from Regan’s supervisor, who sometimes visited the Steimlosk home: “I have not observed any inappropriate action with Mom,” said Jane Crockett.

The Portland Press Herald/Maine Sunday Telegram’s review of the investigative log shows the state failed to follow its own best practices by not conducting any site visits. And nowhere in any correspondence between doctors and child protective workers was any concern or acknowledgement that removing a medically fragile 4-year-old boy from his home, his parents and his siblings might be traumatizing.

Donna Bailey, an attorney who worked with Maloney on the case, said she was troubled by DHHS’s actions.

“It became apparent the department caseworkers had made up their minds very early in its investigation, and then focused on building its case, instead of undergoing a thoughtful and thorough investigation,” said Bailey, who is also a state representative from Saco.

District Court Judge Peter Darvin, who heard the state’s request to remove Jaxen from the home, was not swayed by the state’s case.

“Court denies request for (protection order) based on the facts alleged including failure to adequately explain the role and oversight of medical professionals in placement and maintenance of the G-tube and tracheostomy,” he wrote, also citing the “presence of three other children in the household and failure to reference their care.”

The decision was unusual because courts almost always side with the state in child protection cases.

Jaxen Steimlosk plays with a tablet at home. Ben McCanna/Staff Photographer

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The rejection of the preliminary protection order did not end things. The state kept pushing.

Landry continued her investigation, and the state decided to move forward with a trial to attempt to gain custody of Jaxen.

The caseworker also saw an opening to strengthen the case by bringing in one of the other Steimlosk children, 9-year-old Ever.

Ever, Cassie said, has long been concerned about Jaxen. After his feeding tube surgery, the girl told her mother she had picked out a black dress to wear in case her brother dies.

In late winter 2019, around the time the Steimlosk family was being frozen out by their pediatrician, Ever had a traumatic experience on the school bus. School officials said there was some difference of opinion about what happened, but Ever said another student touched her inappropriately.

The Steimlosks were not happy with how the school district handled things. Because Ever suffered from anxiety and stress over what happened, they kept her out of school for a time and then Cassie home-schooled her.

Records show Landry, the DHHS caseworker, had numerous conversations with the assistant principal at Ever’s school, Mabel I. Wilson in Cumberland, and with Rose Bradshaw, a private counselor who had been counseling the girl about the incident. Bradshaw, who was aware the Steimlosks were being investigated for abusing Jaxen, ended up reporting to DHHS that she had concerns about “the discrepancies between Ever’s symptoms that Cassie reported to Rose, and Ever’s lack of symptoms the school reported to Rose.”

The Steimlosk family was now forced to deal with that in addition to planning for the custody trial.

On Oct. 7, while both sides were preparing records and lining up experts, DHHS did something unexpected: It sent a letter to Cassie informing her that she had been “substantiated” for physical abuse and neglect of Jaxen and “indicated” (a lower threshold than substantiated) for emotional maltreatment of Ever.

An identical letter was sent to Tim, who had not been brought into the accusations before.

Jaxen and his father, Tim, work together to build a paper tepee on the kitchen floor. Ben McCanna/Staff Photographer

The substantiation reports were separate from the court process and didn’t carry any weight other than with DHHS. The state could have made those reports at any point from the time it launched the investigation back in June. Newberger, the Boston child abuse expert who was prepared to testify for the family, said the timing indicated the state was trying to gain leverage before trial.

But it didn’t work, in large part because of another figure who entered the case: Steven Carey, a Portland attorney.

Carey was Jaxen’s guardian ad litem, appointed by the court to represent the sole interests of the child in the custody case, while other lawyers represented the parents and the state. Carey’s role would be pivotal.

He did what DHHS investigators never did: He spent several hours with the family in their home, and reviewed Jaxen’s medical records and the investigative log from the agency prior to writing his report.

He said Andrews, Cassie’s therapist, acted appropriately in making a report, even though she acknowledged “it is entirely possible these illnesses are legitimate and tragic, but suspicion requires report.”

As for LaRue, the home nurse, he said her report was not consistent with her own logs and she didn’t have much of a history with the family.

Carey thought it was more telling that Ritger, who said he had concerns for years, never made a report or offered to provide the family with any help. Ritger also acknowledged to Carey that he might be biased about the case and frustrated that the family sought advice from other doctors.

Carey called it concerning that Newton, the Massachusetts medical child protection specialist, made such a quick opinion with an admittedly cursory review. He said Newton didn’t appear to follow her own hospital’s best practice guidelines, which require “review of all medical records” both at MGH and other institutions. He also noted that Boston Children’s sent a letter to the family, after Maloney inquired, indicating no one there had ever reported Cassie to child protective services in Maine or Massachusetts.

Carey also challenged Brownell’s assertion that Jaxen’s symptoms were observed only by Cassie. Carey said he counted at least 15 mentions of breathing issues observed by medical professionals prior to the breathing tube, not to mention the symptoms observed by home health nurses.

“I question if Dr. Brownell carefully reviewed all of the records, in particular the nursing records,” Carey wrote. “I am not a doctor but I was able to find notations in the nursing records of all these symptoms.”

Finally, Carey said he “found it compelling that no doctor that has treated Jaxen in Maine or in Massachusetts has ever filed a mandatory report on the parents.”

Carey concluded that he did not support a finding that Jaxen was in jeopardy and said the court should dismiss the DHHS petition. He also encouraged Cassie and Tim to “take a more focused approach to Jaxen’s care,” pointing out the number of specialists they had consulted.

Excerpts from a 19-page report by Steven Carey, whom the court appointed to represent Jaxen Steimlosk. Carey concluded that the state had not demonstrated the boy was abused and had no grounds to take custody, forcing the state to drop its case.

Carey filed his report with the court Nov. 11, days before the trial was to begin. Records show DHHS officials emailed Carey and tried unsuccessfully to change his mind.

On Nov. 14, citing Carey’s report, the state filed a motion to dismiss its case. The judge signed off.

The assistant attorney general who prosecuted failed to notify the court of the Steimlosks’ objection, violating the rules of civil procedure. She later apologized for the oversight.

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The Steimlosks were relieved that the case was dismissed, but they wanted a hearing. They wanted to hear a judge conclude the state was wrong.

Instead, they learned that the dismissal did not vacate the DHHS abuse report on Tim and Cassie. Although it was only an administrative decision, without the weight of a court order, it was still a part of their record with the state. The assistant attorney general said the family would have to take that up with the department.

So Maloney did. She filed an official request for review and then kept bugging the state week after week.

On Dec. 19, she sent copies of the expert report prepared by Newberger, the Boston pediatrician, to officials at DHHS and even sent one to Gov. Janet Mills. Newberger didn’t hold back criticism.

“It appears to me that the work of DHHS in this case reflects an immediate predetermination of abuse, based on a biased and superficial reading of selected medical records, followed by an effort to build a case to support the prejudgment,” he wrote. “In so doing, under the color of its mission to protect children, DHHS grievously harmed Jaxen Steimlosk’s family.”

On Dec. 20, the Steimlosks received a letter from a compliance manager in the Office of Child and Family Services. The substantiations were all overturned.

“As a result of the review it was concluded that there is insufficient information in the case record to support the finding of abuse or neglect that was contained in the letter you received from the caseworker,” it read.

After an exhaustive investigation, and multiple efforts to remove the child, the state finally admitted it didn’t have enough proof of any abuse or neglect.

Maloney fought to get all the records and to line up experts, but it came at a cost – approximately $240,000 for legal fees and medical experts over their six-month battle. The Steimlosks were fortunate to get help from Cassie’s mother, who had recently sold a rental property and used that money to help pay the costs.

“What other family has that luxury?” Cassie said.

Tim said he and Cassie have agreed on every decision when it comes to Jaxen, and he has been saddened and upset by what she’s gone through.

“Too many tests is not mistreatment,” he said. “All we have to go on is what we witness and what doctors tell us.”

Maxine Eichner, a law professor at the University of North Carolina and an expert in child abuse, said she has seen a rise in medical child abuse cases as more pediatricians have become certified as child abuse experts. While Eichner said some parents do harm their children through medical care, many parents are falsely accused.

In 2013, 14-year-old Justina Pelletier of Boston was removed from her parents over suspicions of medical child abuse and hospitalized for 16 months. The state eventually returned Pelletier to her parents and acknowledged missteps. Newton featured prominently in that case.

“What I’ve seen in case after case is, child protective workers focus on a few unexplained symptoms and then overlook things that would aid the parents,” Eichner said.

Eichner said the Steimlosk case is “one of the weakest medical child abuse cases I’ve seen.” She said no doctor would subject a child to unnecessary treatment just because a parent wants it.

“A doctor can only validly deliver care they believe is appropriate,” she said. “It doesn’t appear that (investigators) looked through the records.”

Bailey, the Saco attorney, said she’d like to see DHHS examine its processes.

“I think there needs to be some redress for families such as the Steimlosks to be able to seek and obtain sanctions when they have been through such an ordeal,” she said. “As structured currently, the department can essentially maintain a scorched-earth campaign against a family, and then simply walk away, while the family is left to try and pick up the pieces of their lives.”

On a day last month at the Steimlosk home, the kids were huddled together on the couch after school, each playing a game or reading on a mobile device. Jaxen joined them after his nap. He still needs a lot of rest.

The Steimlosk siblings, from left: Madi, 14, Jaxen, 4, Jonas, 12, and Ever, 9. Ben McCanna/Staff Photographer

He has his own room. Most of his medical equipment and supplies are hidden away in a closet, but a movable cart holds a breathing device, heart monitor and other necessities. Cassie said she doesn’t want his room to feel like a hospital.

Jaxen is stable and hasn’t had any recent hospitalizations but still experiences symptoms.

The family is grateful to the judge who denied the emergency protection order and to Carey, whose report may well have been what forced the state to dismiss, and, of course, to Maloney and Bailey. And they are grateful for the doctors who continue to treat Jaxen. Since the feeding tube surgery, he has gained 10 pounds and grown 7 inches. He turns 5 in May and, if all goes well, can enroll in kindergarten.

But Cassie said the ordeal has been emotionally exhausting and she can’t shake the feeling of being labeled a child abuser.

“I think a normal human response is for justice, for people to apologize for their actions, to truly see that they were wrong, but I did not and do not expect an apology,” Cassie said. “Apologies indicate people have taken responsibility for their mistakes, and nothing we have received so far has acknowledged responsibility for any damage done.”

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