According to a contemporary Continuing Education course for nurses:
Philip Patrick was born prematurely with multiple birth defects, including malrotation of the bowels and craniosynostosis. For the first ten months of his life he failed to thrive and endured repeated surgeries and hospitalizations in four different cities. Doctors at Vanderbilt Hospital treated him for multiple infections, then came to believe that his mother, Julie, might be responsible for Philip’s illness. They suspected she was injecting fecal matter into Phillip’s system to cause blood infections and were suspicious of her uncanny ability to predict his illnesses. A gastroenterologist diagnosed MSBP and called CPS. The state took custody of Philip and thereafter, Julie was only allowed infrequent, 15 minute supervised visitations. Despite separation from his mother, Philip got sicker, suffered from renal failure, had to be placed on a respirator and was given blood transfusions. He died alone, one month after the state took custody.1
According to the Appellate Division of the Supreme Court of the State of New York:.
This action arose from an order of the Family Court, Orange County, which awarded temporary custody of the plaintiff Ashley Straton to the Orange County Department of Social Services. Ashley Straton, who has been chronically ill throughout her life, was taken to an array of doctors and hospitals, with few favorable results. One doctor suggested that Ashley be admitted for psychological evaluations, and when Mrs. Straton refused to admit her daughter, the doctor reported the Stratons to the DSS. The DSS conducted an investigation and, upon an order of the Family Court, received temporary custody of Ashley. At a custody hearing before the Family Court medical evidence was presented by the testing physicians that Ashley might suffer from Munchausen’s Syndrome by Proxy, a condition in which a child becomes ill because of her parent’s desire for attention, manifested by her parent’s persistent insistence that she is ill.
Ashley was hospitalized and treated for approximately one year, during which time, based on the medical recommendations of six physicians, her mother was permitted no contact with her. Ultimately, the Family Court determined that Ashley’s condition had not improved in the custody of the DSS, the order granting temporary custody was vacated, and Ashley was returned to her parents.2
Staff writer Cynthia Hubert of The Sacramento Bee provides the details behind a settlement in excess of $800,000 that Mono County and the state of California agreed to pay out:
Trevor Nolan, who was 5 years old and suffered from a rare blood disease, died at a Reno hospital in April 1997, less than three weeks after the county’s Child Protective Services removed the boy from his mother’s custody.
CPS turned Trevor and his brother Wade, then 6, over to their father and later to foster parents as they investigated allegations that she deliberately kept the younger boy sick. Trevor, who suffered from an illness called glycogen storage disease that required him to be fed from a tube from infancy, died as his mother was driving to visit him.3
The 10th Circuit Court of Appeals describes what happened to the Roska family:
Morrison’s investigation revealed that one of Rusty’s psychologists and a doctor at Primary Children’s Hospital had suspected MSBP but were unable to substantiate a diagnosis. Although Morrison later admitted that Rusty was not in imminent danger of death, the decision was made to remove Rusty from the Roskas’ home.
. . . Plaintiffs contend that, while in the home, Sneddon pushed Rusty’s sisters, Maria Stewart and Jessica Roska, as they attempted to comfort Rusty, and abused others in the home, both physically and verbally. DCFS placed Rusty in a foster home, where he allegedly was not given proper medication for his chronic pain.4
In reporting on the Roska case, Deseret News explained: “John Soltis, assistant Utah attorney general, said case workers believed that if they removed Rusty Roska from the home, and if his health improved, that would prove their suspicions. At the time, doctors were trying to find the cause of Rusty’s sickness, which included chronic pain and loss of appetite. It was later determined by doctors that Rusty had suffered from a leaking gall bladder.”5
The U.S. District Court, Eastern District of Washington, describes a case decided in December 2013:
Ms. Bentley Miller brought R.B. to the hospital for a neurological evaluation and seizure complaints. However, Defendant Harper and the doctor team suspected that Ms. Bentley Miller suffered from Factitious Disorder/Munchausen’s Syndrome by Proxy and placed R.B. on administrative hold, after referring the matter to CPS. The physicians’ collectively opined that Ms. Bentley Miller presented false and unsubstantiated medical symptoms regarding her daughter R.B. and reported that both R.B. and J.G. were in “imminent risk of harm” if left in the care of Ms. Bentley Miller.
Based on the physicians’ reports, Defendant Sam Cain, a social worker assigned to CPS, placed JG and RB into Temporary Protective Custody and initiated Shelter Care and Dependency proceedings.
After the expiration of the 72 hour administrative hold, the minors were returned to Ms. Bentley Miller’s custody, after the Superior Court found insufficient reasonable cause to believe that shelter care was necessary.6
No one is immune against such accusations. Reporting in the Bakersfield Californian, columnist Lois Henry reports on the recent case of a doctor whose child, identified as “R.D.,” had been transferred to Lucile Packard Children’s Hospital, which enlisted the services of Dr. John Stirling, director of the Center for Child Protection at Santa Clara Valley Medical Center:
Without examining R.D. nor reviewing her full medical records, Stirling spoke with other doctors at Lucile Packard and told Deeths R.D. did not have cystic fibrosis and that the treatments she’d been following were unnecessary. He said a CPS case had been initiated and told Deeths she had to follow Lucile Packard’s discharge orders to the letter.
The discharge summary shows that while doctors initially took R.D. off many of the medications and treatments she’d been on when admitted, they ultimately re-prescribed them as R.D. did poorly when they were taken away.
Deeths did follow the discharge orders and ultimately was dinged for it by CPS after another hospital stay in early February that year.
Henry explains “Deeths’ lawsuit contends the doctors knowingly, or negligently gave bad information to child protective services resulting in the loss of her children. It does not say how much Deeths is seeking in damages.”7
The New York Times reports on a case involving a foster mother who was honored by former First Lady Nancy Reagan for her remarkable commitment to special needs children:
In a complaint last month against a woman who was once honored at the White House for her work with children, the California Department of Social Services described how three children in her care had died, suffering heart attacks or suffocating from overdoses of medication.
The state’s complaint, based on a confidential medical report, accuses Yvonne Eldridge, 40 years old, of Walnut Creek, of causing or contributing to the deaths of the three children and of harming others.8
The National Registry of Exonerations – a joint project of the University of Michigan Law School and the Center on Wrongful Convictions at Northwestern University School of Law – explains that her appellate attorney argued that her original defense “failed to present evidence that one of the doctors who raised allegations against Eldridge, Dr. Marc Usatin, had previously made a pass at Eldridge, had been accused of a series of unwelcome sexual overtures directed at other patients and hospital staff, and had a history of accusing women of Munchausen syndrome by proxy.”9
William R. Long, M.Div., Ph.D., J.D. describes a Missouri case in a paper sponsored by the Autism Research Institute:
Despite the evidence that Ryan’s brother suffered from a rare genetic disorder that yielded chemicals in the blood quite similar to those found in Ryan, prosecutors brought Mrs. Stallings to trial. Though she was described as a “very loving mother” who loved to care for her baby, the circumstantial evidence of antifreeze poisoning, combined with the half-full can of antifreeze in the garage, convinced the jury that she had murdered her child, and she was sentenced to life imprisonment as a result. Several months later, however, chemists from St. Louis University became interested in the case and retested frozen samples of Ryan Stallings’ blood. They concluded that the original lab tests yielded incorrect results and, in fact, Ryan had died from the same genetic disease that afflicted his brother. On Sept. 20, 1991 prosecutors then came forward to dismiss all charges against Patricia Stallings, after she had lost her first son and had spent fourteen months in prison.10
The phenomenon is international in scope. As the United Kingdom’s House of Lords describes a case from the Netherlands:
A young child aged 11 months was separated from her mother because of fears the mother was suffering from Munchausen syndrome by proxy. The child was returned five months later, following medical reports which found the child’s arrested breathing had a physical explanation and that there was no sign the mother was suffering from any psychiatric disorder.11
During a presentation given by Dr. Helen Hayward-Brown at the University of Western Sydney, this case was cited as a rather typical one:
A 6 year old boy was said by Professor David Southall of North Staffordshire Hospital to be a victim of fabricated illness. The boy’s mother claimed that she suffered acute anxiety and depression as a result of the stress of dealing with the accusations against her. Her son was removed from the at-risk register after three months, when his condition was diagnosed as extensive and severe allergies.12
THE PATRICK CASE
SENDING THE WRONG MESSAGE
The description of the Patrick case, above, was drawn verbatim from a continuing education course for nurses intended “to educate nurses about ethical and legal issues related to mandatory reporting.”13
While the summary of the case is accurate, what is troubling is the interpretation of this tragic case in the context of professional training.
The day that custody was taken away from Julie Patrick, one of the nurses used her lunch break to visit her. When the nurse walked in, Julie was by herself, crying and sobbing. During her deposition in the legal proceedings that followed, Linda was asked to describe what happened during the visit:
I went over to her and put my arms around her, and my feelings and thoughts at that particular moment were, right or wrong, she just needed a hug. So I put my arms around her and I just hugged her. We talked for a few moments and then I wrote my phone number down and said, “If you just want to talk, give me a call.” I just felt really sorry for her.14
According to this training program, “In visiting the accused parent outside the hospital setting, Linda was allowing her personal feelings of empathy and sympathy to override her professional boundaries and judgment.” She “felt caught in a moral dilemma between doing what her conscience and prior training told her to do, and what her employer was telling her do.” The nurse overstepped her professional boundaries, according to the training program, and this is so regardless of whether the outcome was that of an innocent mother being accused of a crime that she did not commit, and of her young boy dying alone.
Some time after Patrick’s death, a new medical examiner concluded there was no evidence of Munchausen syndrome by proxy. “I do not believe that Phillip Patrick’s death represents Munchausen Syndrome by Proxy,” Dr. Bruce Levy wrote in his review of the original autopsy report. Instead, the 11-month-old boy’s death resulted from multiple birth defects, “most notably those related to his gastrointestinal illness,” Levy wrote.
“I didn’t have any confidence in the way this case had been handled by the previous medical examiner,” said Davidson County District Attorney General Torry Johnson, who asked Levy to review the case.15
The Patrick family filed a $120 million lawsuit against Vanderbilt University and the doctors who treated their son, alleging that their civil rights were violated, and charging the doctors with malpractice and outrageous conduct. A spokesperson for Vanderbilt Children’s Hospital said “we are confident that Vanderbilt and our physicians acted in the child’s best interest.”16
THE STRATON CASE
BURDEN OF EVIDENCE
The case of Straton V. Orange County Department of Social Services serves well to illustrate how low the standard of evidence for removing a child is – particularly when a hospital works hand-in-glove with a child protection agency – and how impractically high the standard of evidence is for filing a successful suit against the offending agencies.
While precious little evidence -indeed, if any at all – was needed to remove Ashley from her parents care for a year on the theory that she would improve, the Court ruled that the parents had “failed to produce evidentiary proof in admissible form sufficient to require a trial of material questions of fact” on which they rested their claim. In plain English, the parents didn’t have enough evidence to assert their claim that medical malpractice had occurred.
As for the false imprisonment charge, the Court ruled that: “The retention of a patient by a hospital under circumstances such as those present in this case is privileged under Family Court Act § 1024 (c) and Social Services Law § 419.”17
Regarding the Straton case, Corey M. Perman, Esq., explained that: “Under this analysis there is a high burden of proof for parents alleging medical malpractice against physicians or social service agencies. Additionally, parents must provide expert medical opinion evidence in order to demonstrate the merits of their claims.”
Perman expresses the various tensions that frequently arise in such cases:
the inherent potential for misdiagnosis forces physicians into the precarious role of balancing several interests. First, an attempt to treat a child without full disclosure from the parent creates a risk of error due to falsified information. Second, the physician must avoid causing greater harm to a child due to a misdiagnosis of the child’s malady or a failure to accurately diagnose MSBP. Finally, the physician must be aware of the possibility of alienating a wrongly accused or suspected parent.18
MISDIAGNOSIS LEADS TO MEDICAL DELAYS
In the medical journal Clinical Medicine Insights: Pediatrics, Dr. Lynne Wrennall closely examines a “Failure to Thrive” case that resulted in significant delays in the medical treatment of a child, pseudonymously identified as Melissa. Noting that as Failure to Thrive is frequently linked to the suspicion of child abuse, the Child Protection team was notified and came to dominate the discourse, casting the suspicion of Munchausen’s Syndrome by Proxy /Fabricated Illness, and as a direct result the case was consequently misdiagnosed as having “no organic cause.”19
The deployment of the Child Protection perspective resulted in significant delay in the diagnosis of the child’s brain tumour. The child was ultimately found to be suffering from an optic chasm mass lesion involving the hypothalamus and the medial temporal regions, resulting in Diencephalic Syndrome. The evidence in this case is that erring on the side of suspecting Munchausen Syndrome by Proxy/Fabricated and Induced Illness, was not “erring on the side of the child.”
Several lessons need to be learned from the case. The importance of ensuring that the Child Protection perspective does not displace adequate assessment of alternative explanations for the child’s condition is emphasised, as is the need for good communication in medical relationships.
Dr. Wrennall ultimately concluded: “The exposit case demonstrates how a child may be endangered when Child Protection discourse is substituted for appropriate investigation of possible organic causes of her condition. So serious was Melissa’s malnutrition that she was on the verge of multiple organ failure when the intervention of a Paediatric Neurologist was sought.”20
Virginia T. Sherr echoes this concern in the journal Medical Hypotheses, writing: “Employment of such inaccurate ‘diagnoses’ has imperiled the health of genuinely sick children and imprisoned their mothers. Presumably, many supposed cases of MSBP, had they been fully investigated, would have revealed underlying infections or other difficult-to-diagnose, poorly understood illnesses as true causes of the children’s problems.”
Sherr explains that this is particularly problematic with disorders such as tertiary Lyme disease, which is “often misdiagnosed.” Physicians who are unfamiliar with the Lyme patients’ “shifting, seemingly vague, emotional, and/or bizarre-sounding complaints, frequently know little about late-stage spirochetal disease.” As a consequence, the parent may find herself facing charges of having fabricated the illness.21
Charles Pragnell explains in the British Medical Journal that the MSBP diagnosis may also work to the detriment of children, as their parents – familiar with the possibility of facing a false allegation of abuse – may avoid seeking needed medical treatment for their child. Pragnell explains that the MSBP diagnosis:
has had a devastating and damaging effect on many hundreds of children and families in the United Kingdom and around the world. Emotional damage is caused to children, their parents, and siblings due to their being separated and placed into state care; or where stigmatized parents avoid contact with doctors because they would be dismissed as child abusers if they presented their children for medical treatment.22
There is yet another way that the MSBP / fabricated illness / medical child abuse discourse works to the detriment of children and their families. For each and every continuing education credit-hour obtained during medical conferences, how many are obtained during seminars promoting the diagnosis of MSBP – or one of its variants – to the exclusion of other seminars that may impart diagnostic techniques for genuine – or, at the very least – more prevalent medical ailments?
By way of example, Murat Topbaş and colleagues note that: “Epilepsy is a most common serious neurological disorder and is one of the world’s most prevalent non-communicable diseases.”23
Its prevalence notwithstanding, Anne T. Berg and colleagues note in the January 2014 edition of the medical journal Epilepsia: “Physician knowledge, particularly among nonneurologists, of the range of seizure types and impact of epilepsy is clearly an area for medical student and resident training, quality improvement, and continuing medical education. Currently in the United States, there is no requirement for pediatric residents to receive neurology training; it is an elective.”24
There is one key element of the problem; Munchausen’s Syndrome by Proxy – currently being recast as Medical Child Abuse – is frequently offered as an elective course in continuing medical education.25
The end result is that a theoretical and highly-controversial construct – one that varies in definition from one year to the next – competes for precious time that would be far better allotted for continuing medical education concerning genuine disorders that have better understood etiologies, treatments, and prevalence rates.
“Cancer is the leading cause of disease-related death in children in developed countries and remains an important public health concern because of its great physical and psychological impact on the affected children and their families,” explain researchers from McGill University, Canada.26
How some physicians react to the leading cause of disease-related death in children is telling. Researchers at the Department of Epidemiology and Public Health, University of Leicester, UK, conducted a survey among parents who had children who had a confirmed diagnosis of cancer or brain tumor. One half of the participants in the study recounted disagreements with their doctors concerning the seriousness of children’s symptoms. Some parents felt that doctors discounted their special knowledge of their child. The researchers explained:
The narratives of parents who had long disputes and their corroborating medical notes, indicate genuine flaws in the systems for management of children with rare disorders that are difficult to diagnose. Parents reported indifference, incompetence, delays, inaction, and most importantly, failure to take their concerns seriously. Some parents felt that without their persistence in challenging clinicians, diagnosis of their child’s illness would have been further delayed, whereas others regretted their perceived failure as advocates.27
The results of that study were published in Lancet in 2001 – just as accusations of Munchausen’s Syndrome by Proxy were on the rise in the United Kingdom. While correlation does not necessarily equate to causation, there is a growing body of evidence that would support claims by critics of the MSBP diagnosis that the correlation is more than merely coincidental.
A recent article in BMJ explains:
Paediatric cancer is perhaps the archetypal disease ‘not to miss’. In developed countries, cancer now causes more childhood deaths than any other serious illness, including meningitis, yet a general practitioner (GP) will encounter a child with cancer only once every 20 years, and a quarter of children wait more than 3 months to obtain a diagnosis.28
Similar to the findings of the University of Leicester study, it was found that the nature of the doctor-parent relationship “helped and hindered the diagnostic pathway.” General practitioners’ “prior perceptions of parents as being ‘sensible’ or ‘worriers’ influenced how gravely they treated parental concerns, with ‘worriers’ being taken less seriously. Some parents believed GPs failed to listen to their anxieties and discounted their expert knowledge of their child.” Other specific delay factors included some general practitioners reluctance to take blood from children, and some parents feeling unable to voice effectively their concerns.
The implications have the potential to be utterly disastrous for children with less common disorders – even in the absence of misdiagnoses of MSBP. In The Journal of Emergency Medicine, Daniel P. Davis and colleagues presented the results of a study consisting of one of the largest case series of patients diagnosed with spinal epidural abscess. They concluded that the “high incidence of diagnostic delays in SEA patients is concerning and illustrates the need for alternative screening strategies.” Multiple emergency department visits and inpatient delays “were both relatively common, and neurologic deterioration was observed in over half of these patients after the initial presentation.” There was also “a significantly higher incidence of residual motor weakness in patients with diagnostic delays, including those admitted to the hospital with alternative diagnoses.”29
RARE DISEASE UK REPORT
Rare Disease UK is a national alliance for people with rare diseases and those who support them. Its membership is open to all and includes patient organisations, clinicians, researchers, academics, industry and individuals with an interest in rare diseases.30
In summer of 2010, Rare Disease UK carried out a survey of patients and families affected by rare diseases. The aim of the survey was “to find out more about the experiences of people living with a rare condition in the UK, and to identify some of the common issues and problems they frequently face.”
Alastair Kent, Chair of Rare Disease UK and Director of Genetic Alliance UK explains the findings: “This survey, reporting the experiences of nearly 600 families with rare diseases across the UK, is one of the largest that has ever been carried out. The picture it paints is a bleak one, with significant numbers reporting delays in diagnosis. Wrong diagnoses are common (sometimes happening two, three or more times). Access to specialist knowledge and expertise is too often fraught with difficulties and unnecessary institutional obstacles get in the way for patients and families seeking the help and support they need and should be able to expect.”
The remarks of patients responding to the survey are illuminating. A patient with craniopharyngioma explains the difficulties he’d encountered in try to obtain a proper diagnosis: “When I had a tumour which is rare, doctors kept sending me home saying it was migraines or the flu, oh and yuppie flu. Then when they didn’t have any more ideas they told me it was in my imagination.”
“I have been living with Duchenne muscular dystrophy for 23 years having been diagnosed at 5 years old. To start with the local doctor suggested my mum was an overoveranxious mother having seen me fall. My muscle biopsy proved he was wrong,” said Carl, who has Duchenne muscular dystrophy.
“Many doctors had no idea and some even said the symptoms were in my head,” said a patient with myasthenia gravis.31
Among the key findings of the survey:
1. Patients and families affected by rare diseases wait far too long for a correct diagnosis.
2. A worrying number of people with rare diseases receive incorrect diagnoses before their final diagnosis is made.
3. Patients and families worry about the level of awareness of rare diseases among healthcare
4. Patient organisations play an important role in the diagnosis of rare diseases.
5. The experiences of patients and families of diagnosis can vary greatly raising concerns about equality of access and fair treatment in different parts of the country.
A total of 119 different rare medical conditions were represented in the survey. The conditions ranged from ultra-rare to more “common” rare diseases, including chromosomal, single gene, multifactorial and non-genetic conditions, as well as undiagnosed conditions. Some patients suffered from multiple, different rare diseases.
The report explains: “Despite the wide variation in the symptoms, prognoses and medical needs of these conditions, the survey indicated commonalities in experiences in regards to their care, information and support. The survey also highlights inequalities in the services received by patients with different rare diseases and even between those affected by the same rare disease in different parts of the country.
“Timely prevention and diagnosis of rare diseases is essential. Without accurate diagnosis, appropriate screening programmes and targeting of diagnostic tests, patients and families cannot access effective treatment, therapy, or manage their condition appropriately. A delay in diagnosis or misdiagnosis may also involve multiple avoidable appointments with doctors and consultants, incorrect treatments and diagnostic tests and significant distress.”
What is most disconcerting is the length of time the respondents spent in seeking out a correct diagnosis. Only 26 percent said that the diagnosis was provided in less than three months. 24 percent reported that it took between 3 month to one year; 27 percent reported that it took between one to five years; 19 percent said that it took from 5 to over 20 years to obtain the proper diagnosis.
Also of concern was the number of doctors that were seen by respondents before they obtained the correct diagnosis. While 32 percent reported that it only took one to two doctors, 46 percent reported being seen by between 3 to 5 doctors, while the remaining 22 percent reported that they had seen from 6 to over 15 doctors before receiving the correct diagnosis.
Clearly, a certain degree of “doctor shopping” may be essential for parents who are seeking out the correct diagnosis and most appropriate treatment for their child’s rare disease. For fully 22 percent of these parents – those who seek aid from 6 to over 15 doctors – they are, entirely unbeknownst to themselves, constructing a case that may ultimately be used to their detriment.
The introduction of the child protection perspective under these circumstances may not only result in an unanticipated and entirely undeserved intervetion by child protection authorities, but may ultimately lead to the removal of their children. Once in the foster care system, the children’s chances of obtaining a proper diagnosis and appropriate treatment are greatly diminished.
THE SHIRE RARE DISEASE REPORT
In April 2013, Shire plc released a Rare Disease Impact Report, which uncovered “the health, psycho-social, and economic impact of rare diseases on patient and medical communities in the United States and United Kingdom.” The report, which was developed in collaboration with an external advisory board of leaders in the medical, advocacy, health policy and health economics fields, was distributed at the World Orphan Drug Congress in Washington, DC.32
What, exactly, are rare diseases? The report explains: “Rare diseases are conditions that affect a small portion of the population but are often chronic, progressive, degenerative, life-threatening and disabling. While individual rare diseases are uncommon and disparate, collectively, there are approximately 7,000 different types of rare diseases and disorders affecting an estimated 350 million people worldwide.”
Among the respondents in the Shire survey were those afflicted with some diseases that may have recognizable names, such Addison’s disease, Bone cancer, Cystic fibrosis, Group B strep disease in newborns, Lupus, Mitochondrial genetic disorders, Multiple chemical intolerance, and Pediatric multiple sclerosis.33
The findings of the Shire survey mirrored those of Rare Disease UK. According to more than 1,000 survey responses from a multi-stakeholder audience sample, the Rare Disease Impact Report reveals:
It takes, on average, more than seven years in the US and five years in the UK for a patient with a rare disease to receive a proper diagnosis
On the journey to diagnosis, a patient typically visits up to eight physicians (four primary care and four specialists) and receives two to three misdiagnoses
Physicians (both primary care and specialists) often don’t have the time, resources and information to properly diagnose/manage patients with rare diseases, compared to more common diseases
Due to the uncertainty, the lack of available information, resources, and economic strains, rare diseases take a major emotional toll on patients and their caregivers.
Rare diseases may face something of an uphill battle to gain acceptance among mainstream practitioners. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus infections, also known as PANDAS, was “coined in 1998 to describe a subset of childhood obsessive-compulsive disorders (OCD) and tic disorders triggered by group-A beta-hemolytic Streptococcus pyogenes infection,” according to a highly-accessed online review in Clinical Practice and Epidemiology in Mental Health, which notes that as well as stimulating considerable attention, “the PANDAS hypothesis has generated controversy and skepticism.”34
“Mitochondrial disorders have the highest incidence among congenital metabolic diseases, and are thought to occur at a rate of 1 in 5000 births,” notes a recent article in the encyclopedic medical journal Biochimica et Biophysica Acta (BBA) – General Subjects. The journal recently devoted an entire issue to the subject of mitochondrial disorders.35
Australian researchers explain in the same journal that: “An expanding number of mitochondrial diseases are being recognized, despite their phenotypic diversity, largely due to improvements in methods to detect mutations in affected individuals and the discovery of genes contributing to mitochondrial function.”36
Clinicians in London explain that a more complete understanding of mitochondrial functioning “will be crucial in developing therapies for the plethora of diseases in which the pathophysiology is determined by mitochondrial dysfunction.”37
REALITY OF THE HOSPITAL EXPERIENCE
Journalist Neil Swidey of the Boston Globe explains that Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus infections (PANDAS) were the subject of some contention at Boston Children’s Hospital. More than a year before things reached a boiling point, one prominent rheumatologist stopped accepting PANDAS patients referred to the rheumatology clinic at the Hospital. Thereafter, two cases walked in the door of the esteemed institution seeking help: Swidey explains what happened next:
Things came to a head this summer when parents of an 11-year-old girl who was being treated for PANS took her to Children’s because she was no longer eating. Maine lawyer and PANDAS activist Beth Maloney got involved in the case at the request of the parents. She alleges that specialists at Children’s insisted to the parents that PANDAS doesn’t exist and discontinued her antibiotics, arguing that the girl’s problems were entirely psychiatric. As relations worsened, she says, the hospital stationed security guards outside the girl’s room, presumably to prevent the parents from interfering with their daughter’s care.
The 11-year-old girl was eventually released, but, Maloney says, the pattern was repeated in early October. This time, the lawyer received a panicked call from a father who had learned that child protective services was going to court seeking temporary custody of his 16-year-old daughter. The girl had arrived at Children’s with a PANS diagnosis, which the attorney claims the Children’s doctors rejected. The next day, Maloney found herself standing before a Suffolk County judge. “What we have is an argument within the medical community about whether infection can cause behavioral disorders and mental health issues,” Maloney recalls saying. “And Boston Children’s Hospital is going to work that out on the backs of parents in your courtroom.”38
Maloney had no way of knowing, at the time, just how prescient her remarks to the juvenile court judge would turn out to be. As Neil Swidey summarized the plight of the Pelletier family in his column of March 21, 2014:
The Department of Children and Families took emergency custody of the teen on Valentine’s Day 2013 after a diagnostic dispute arose between doctors at Tufts Medical Center and Boston Children’s Hospital over the causes of her medical problems, including difficulty eating and walking.
Tufts doctors had been treating Pelletier for mitochondrial disease, a group of rare genetic disorders affecting cellular energy production, but physicians at Children’s concluded that her symptoms were largely psychiatric in origin. Her parents rejected the new diagnosis, and when they tried to move the girl back to Tufts, the Children’s team notified the state that it suspected the parents of medical child abuse.
Pelletier remained at Children’s for almost a year, most of the time in a locked psychiatric ward, and meanwhile the case gained national attention.
As of today, Justina Pelletier remains a ward of the state of Massachusetts, notwithstanding that a legal mind as sharp as that of Alan Dershowitz – who offered to help the family pro bono – can’t find any legal justification for her detention. By her family’s accounts, she is physically deteriorating rapidly. Her true ailment remains untreated after more than one year, her working diagnosis of mitochondrail disorder having been discarded, with a diagnosis of somatoform disorder having been substituted in its place. According to recent accounts, this occurred in a matter of about 25 minutes subsequent to her entry into the facility.
Her parents stand accused of Medical Child Abuse – the most fashionable term for a modern day Frankenstein’s Monster that just won’t die; its former name being Munchausen’s Syndrome by Proxy.
What did the Wray and Pelletier families do wrong? At least two things, according to a Medscape Practice Essentials entry by Guy E Brannon and colleagues entitled “Factitious Disorder Imposed on Another.” The entry, as last updated in December of 2013, bears this definition:
Factitious disorder imposed on another (formerly factitious disorder by proxy) has as its cardinal characteristic the production or feigning of physical or psychological symptoms in another person, usually a child or adult under the care of the person with the disorder. It is currently understood as including the condition commonly known as Munchausen syndrome by proxy (MSBP).39
According to the article, common presentations of factitious disorder imposed on another (including MSBP) include the following: bleeding; seizures; recurrent apparent life-threatening events; poisoning; apnea; central nervous system depression; diarrhea and vomiting; fever, either feigned (via falsification of chart records) or actual; rash; hypoglycemia; hyperglycemia; hematuria or guaiac-positive stools; and multiple infections with varied and often unusual organisms.
Warning signs that raise the possibility of this disorder, according to Brannon, include: unexplainable, persistent, or recurrent illnesses; discrepancies among the history, clinical findings, and child’s general health; a working diagnosis of a rare disorder; symptoms and signs that occur only in the mother’s presence; a mother who is extremely attentive and always in the hospital; a child who is frequently intolerant of treatment; a mother who appears less worried about her child’s illness than about the medical staff; seizures that do not respond to appropriate therapy; families in which unexplained sudden infant death syndrome occurs; and, a mother with previous medical or nursing experience or an extensive history of illness.40
As all-inclusive as this definition may appear, some definitions are far more expansive. Of particular concern in these cases are the clustering of two factors from Brannon’s checklist; namely “unexplainable, persistent, or recurrent illnesses,” and “a working diagnosis of a rare disorder.”
Elizabeth Wray entered Boston Children’s Hospital with a working diagnosis of PANDAS, while Justina Pelletier entered the hospital with a working diagnosis of mitochodrial disease.
THE CONFLICTING DEFINITIONS
Some doctors, according to Dr. Hayward-Brown, are predisposed to making child abuse allegations in the medical context. Professionals suffer from confirmatory bias where they maintain their beliefs, even in the face of counter-evidence. “It does not matter if it is called a disorder, behaviour or syndrome. It does not matter if it is seen to be psychiatric or paediatric. The outcome is the same.”41
How the mother interacts with physicians and her child are considered in conducting a diagnosis of the disorder, and the symptoms are overinclusive. As Pankratz explains: “If the mother appears calm or distressed, charming or hostile, distant or over-involved, either appearance can be described as characteristic of mothers with MSBP.”42
In the field, definitions may be far broader than that. In an interview with the Pittsburgh Post-Gazette regarding a report she’d filed that resulted in the traumatic removal of an 11-year-old girl from her home, Dr. Sarah Springer said that whenever she suspects Munchausen’s Syndrome by Proxy, she looks for “acts or omissions or allegations or people fabricating symptoms to be seen in a child.”43
Also among the red flags for Munchausen’s or fabricated illness are how the mother reacts to the accusation itself. As Sean A. Spence and colleagues explain in the journal European Psychiatry, “the response which the woman exhibits following accusation offers little clarification: if she admits wrong-doing she is guilty, if she denies wrong-doing her denial is considered symptomatic of MSBP; but of course, her denial might also reflect her innocence.”44
The American Professional Society on the Abuse of Children formed a Taskforce on Munchausen, and in May 2002, the APSAC Taskforce on Munchausen by Proxy, Definitions Working Group, issued “Position Paper: Definitional Issues in Munchausen by Proxy,” which it distributed through the Sage Publications journal Child Maltreatment.45
Therein, the APSAC Taskforce on Munchausen detailed its new-and-improved definition:
Falsification includes but is not limited to the following forms of deception: directly causing conditions, over- or underreporting signs or symptoms, creating a false appearance of signs and symptoms, and/or coaching the victim or others to misrepresent the victim as ill. Only the imagination and sophistication of the perpetrator limit the number and extent of the presenting symptoms. The presence of valid illness does not preclude exaggeration or falsification.
The last two assertions are particularly vexing, as limiting how symptoms may medically present themselves in a potentially abused child only to the perceived “imagination and sophistication” of the alleged perpetrator is in effect leaving the detection and diagnosis itself wide open to the clinicians’ necessarily time-limited perception of the imagination and sophistication of the parent.
The second assertion is somewhat more disconcerting, inasmuch as the presence of valid illness may itself serve as “proof” of culpability by some peculiar leap of logic, when it would more naturally follow that the parent had been following the appropriate course of action in actively pursuing identification of an elusive diagnosis. This would unquestionably be true in the majority of cases, as the Rare Disease UK and Shire reports would bear out.
Many another such Catch-22 for parents had been crafted by the APSAC Taskforce. Consider this advice to clinicians:
“Doctor shopping” may occur and be a sign of PCF when the motivation is not to actually get help for the child but to subject the child to the abuse of repeated investigations and needless procedures by doctors in order to maintain relationships with health care personnel. In other instances, “doctor shopping” is not present; physicians and other health care providers have long-term treating relationships with the children being victimized.
Both doctor shopping and long-term relations with physicians are suspect? Yes, according to the definition provided by the highly-influential APSAC Taskforce.
Professionals need not worry about the possible emotional consequences of removing the child from her parents, as the APSAC Taskforce boldly asserts that:
It is typical for mothers as well as other family members to express concerns that the child cannot cope physically or emotionally without the mother’s ongoing attention and will likely be harmed by separation. However, preliminary findings indicate that these children tend to do quite well upon separation. A number of children are quite indifferent to separation once it occurs.46
Thus has the child protection discourse, through one of its most influential organizations, consigned some few million children with rare diseases to the threat of unwarranted state interventions that may not only result in the unnecessary removal of children from their parents, but may well result also in their true diseases continuing on as undiagnosed for years to come – perhaps even to continue on as something akin to a life sentence.
Throughout the literature on foster care, the physical health needs of children in care have variously been described as precarious, inequitable, dangerous, and as offering “unfulfilled promises.” The prevalence of chronic conditions among foster children has been estimated at between 30 and 80 percent. An estimated 25 percent of foster children have 3 or more chronic conditions. A disproportionate number of foster children are below the 5th percentile for height, weight, and head circumference. It with within the dysfunctional framework of the child protection apparatus that their medical health needs must necessarily be provided.47
SCOPE OF THE PROBLEM
Some of England’s legislators became troubled by the huge wave of false allegations of cot deaths and Munchausen’s by Proxy washing on Britain’s shores. More significantly, some of them were connecting the proverbial dots. On January 7, 2004, the Countess of Mar said during a House of Lords Debate:
We estimate that about 5,000 parents have had their children removed from them, with accusations of Munchausen syndrome by proxy held over their heads. The noble Baroness, Lady Ashton, said that there was no connection between the death cases that came up in court and of which the mothers have been exonerated and the cases of Munchausen syndrome by proxy. However, there is: Professor Sir Roy Meadow invented Munchausen syndrome by proxy.48
On January 18, 2004, Margaret Hodge, minister for children, said in an interview with The Telegraph that it would be wrong to raise the hopes of the families torn apart by the doctor Meadow’s theory, in light of it having been called into question following three miscarriages of criminal justice, and that it was being investigated by the General Medical Council.
Melissa Kite, Deputy Political Editor, of The Telegraph reported Mrs. Hodge as saying that the exact number of civil cases in which Meadow’s theory had been used to remove children from their mothers was unknown, but could run into “thousands or even tens of thousands.”
She added, however: “If a miscarriage of justice was made 10 or 15 years ago, what is in the child’s interest now? If the adoption order was made on the back of Meadow’s evidence and that was 10 years ago, what is in the real interest of the child? If they were taken as babies the only parent they know is the adopted one. It is incredibly difficult. It is a really tough call to make.
“The sort of families that are coming forward are heartbroken families. But if the child was adopted at birth the sensible thing to do is to let it stay. As children’s minister my prime interest has to be the interests of the child.”
A mother whose eight-year-old child was taken from her years earlier after social workers suspected that she was suffering from Munchausen Syndrome by Proxy said: “Something has to be done by the Government. It is vindictive. They suspect you of this thing and it gets out of hand and you can’t stop them.
“What gets me is it was enough for them just to suspect me of Munchausen’s to take my daughter away. If I protest or dispute the evidence they say I’m lying and that proves I’ve got Munchausen’s because lying is one of the symptoms. That’s how it works.”49
In the United States, pediatrician Dr. Kenneth Feldman had managed to carve out something of a niche market for himself by having become involved in an estimated 100 cases over the course of the 25 years preceding 2002. As the Post-Intelligencer reported it:
Because Feldman works for Children’s Hospital and Medical Center in Seattle and consults for the state’s Child Protective Services agency, those allegations invariably trigger strong emergency responses, often resulting in the removal of young children, at least temporarily, from their homes.
It’s that power that is now being publicly questioned. At least five families have sued Feldman over the past six years, claiming he was negligent or reckless in misdiagnosing Munchausen by proxy. In each case, CPS investigators found no evidence of Munchausen, poisoning or any other abuse. Children were returned, cases closed. Never were any criminal charges filed.
But the consequences were severe: One family lost a child they were in the process of adopting. Others spent their life savings getting their kids back, undergoing intense psychiatric testing.50
A number of parents fought back with lawsuits against Feldman and his colleagues. Miles v. State Child Protective Services Department describes in detail how a small army of social workers, physicians, nurses and other experts arrived at a consensus that Ms. Miles had MSBP, and that her children were not safe with her in their home. A foster placement resulted.51
Unfortunately, the Washington State Court of Appeals ruled that immunity shielded mandated reporters even if “the multidisciplinary team committed malpractice diagnosing MSBP that would not support the lawsuit.”52
This is another way that accusations of MSBP – and self-styled experts such as Feldman – injure children. In Miles, the issue concerned a disrupted foster care placement. In Yuille v. DSHA, a potential adoptive placement was disrupted entirely. It is no secret that child protection agencies nationwide are crying over the lack of foster homes to hold their burgeoning populations of foster children, and that they frequently also claim a shortage of suitable adoptive families for children freed (typically by virtue of terminations of parental rights) for adoption. One of the primary reasons for the high attrition rate among both foster and prospective adoptive families is their treatment at the hands of child protection agencies and their allied agencies. 53
CHILDREN’S BUREAU 2013 REPORT
A report to Congress issued by the federal Children’s Bureau in June 2013 notes that there are “common themes in civil lawsuit cases where professionals were sued as a result of working on a child abuse or maltreatment cases.”54
According to the report, these common themes include:
Many cases have involved parents who asserted that child maltreatment reports violated their civil rights, including 4th and 14th Amendment claims.
Other cases were brought under the federal Racketeer Influenced and Corrupt Organization Act (RICO) in which the reporter was alleged to have colluded or conspired with other professionals in responding, allegedly inappropriately, in child abuse or maltreatment cases.
A number of cases involved alleged negligence in supervising children who were known to a professional or agency. Other claims included purported negligence in failing to file reports or bring cases to court as needed.
Many actions discussed whether the alleged wrongdoer was, or was not, acting under “color of state law” (i.e., whether they were a person specifically authorized to engage in government child protective activities).
Several Munchausen Syndrome or Munchausen Syndrome by Proxy cases (i.e., cases where it was alleged a parent had exaggerated, fabricated, and/or induced their child’s physical or other health problems) were included in the types of cases filed.
Many parents alleged that professionals involved in these cases caused them to experience a lack of companionship by not allowing them to have ongoing contact with their children.
Medical and psychological professionals were often sued for making improper referrals or reaching erroneous conclusions.
There were many cases where physicians were sued for assisting or consulting on a case.
Parents sometimes sued on the grounds of false imprisonment when children were removed from their care.
Mandated reporters faced liability when they failed to report allegations of child abuse or neglect.
Note that the only category of abuse or neglect that was singled out by name as having generated “several” lawsuits was not shaken baby syndrome, nor was it failure to thrive, nor was it suspicious bone fractures. According to the report, it was allegations of Munchausen’s Syndrome by Proxy that earned that distinction.
UK’S LEEDS GENERAL INFIRMARY
THE ACCUSATION MILL
Leeds General Infirmary was already at the center of a great deal of controversy when some astounding allegations were leveled its staff. As NHS England – which oversees the hospital – explained: “During 2013 concerns were raised in relation to the quality of care offered to patients undergoing surgery for congenital cardiac conditions at Leeds Teaching Hospitals NHS Trust’s.”55
NHS England continued on to explain: “This led to a temporary cessation of surgery on 28 March 2013, pending an investigation.”
A Quality Surveillance Group was convened to oversee the investigative process. A subsequent “Risk Summit” was held on April 4, 2013, during which “it was agreed by NHS England, Care Quality Commission, the NHS Trust Development Authority and LTHT that a two-phase review would be carried out.”
An externally-led review of staffing, internal procedures and governance took place in April 2013, and an externally-led mortality case review later in 2013. During these stages of the review – described by NHS England as a “rapid review” – no significant or immediate safety concerns were found.
However, a third stage of the review, The Family Experience Report, was issued on March 13, 2014. It provided some insights that were astounding:
The report collates the experiences of 16 children and their families. The majority of the families’ experiences of using the service relate to the time period 2009 to 2013. Some families have a history of more than 12 years contact with the Trust whilst for others it was less than one year. Six children who were originally patients at the Trust chose to have their care transferred to a different children’s heart unit. In the case of six families interviewed as part of this report, their child had died following cardiac surgery at the Trust.
The results of this survey – drawn directly from the report – are, to be generous, quite disconcerting. However, they serve well to illustrate the mindset – or groupthink – that may serve as a breeding ground for accusations against parents:
Families felt that the counselling and support provided following the diagnosis of the congenital heart condition was inadequate, and there was a perception of little compassion or understanding.
Most families felt that they were not given all of the information that they needed to make such a difficult decision about the future of their pregnancy and therefore their child. Some families were provided with a leaflet to read, some were told not to look on the internet for further information, and some were left waiting in a distressed state, or in rooms on their own, and in one case left in a corridor.
Families felt pressurised to have a termination of pregnancy, and when they decided not to proceed with termination they felt they were treated with contempt.
Families felt that their individual circumstances or religious and moral beliefs were not adequately taken into consideration. A Muslim mother felt pressurised to have a termination although this was strongly against her own religious beliefs
Parents did not feel that information about their child’s condition or family circumstances was used effectively to plan delivery of their baby. Some mothers asked to visit obstetric units close to the heart units that could provide the intervention required by their baby and were told that that was not possible. Some families expressed that they had to pressurise consultants to have their baby close to the preferred heart unit and in some cases have arranged this themselves.
With regard to getting second opinion or specialist advice, families perceived a delay in doctors liaising with specialists from within the Trust or doctors in other heart units. The families believe that Leeds Trust is more inward looking and this has impacted on continuity of care for children and their families.
Families who asked for transfer of care to another unit said they were advised that the other unit did not offer the care their child needed. Families experienced difficulties getting the Trust to transfer documentation about their child’s care and in some instances important documentation such as theatre operation notes were missing. Families felt that political and financial issues got in the way of children getting the care they needed. Some families believe that as a result of requesting a transfer to another hospital they have been accused of harming their children and in some cases they have been referred to social services which added additional stress for the families
Some of the reports are heartrending. Consider the account of the mother of a baby girl named Elizabeth:
We were told not to look up the condition or research online as it wouldn’t do us any good. They left us in the room with the nurse for 20 minutes as I was still crying and a wreck.
The account of the parent of a young boy named Tim is illuminating – and particularly so in the context of the possibility of an accusation of an “exaggerted” or “fictitious” ailment being leveled:
They did not seem to have a plan to manage the symptoms of Tim’s heart failure. There was no plan of care that we could see, particularly to ensure there was continuity of care between Leeds and our local hospital. We were made to feel that we were exaggerating the problems he was having. That Tim’s problems were fictitious. We struggled to get information. They don’t seem to want to learn from mistakes. There was no plan of care. The staff seemed to work in a reactive way on a day to day basis.
Many hospitals and clinics – empowered by their interconnectedness with child protection – have gone from adopting a defensive posture against claims of malpractice, to that of taking a pro-active stance against them by virtue of being the first to raise an accusation. As a result, parents at times find themselve struggling against a system that has all of the accusatory odds stacked well in its favor.
Indeed, the only accusation missing from the Leeds Infirmary review is that rather than just stopping with the claim that a potentially rare disorder is “imagined” or “fictitious,” its staffers have not gone quite so far as have their colleagues in the Boston Children’s Hospital. By dismissing a working diagnosis and recasting it as somatoform disorder, that hospital has the best of all possible outcomes. It can leave the patient devoid of needed medical treatment, even as it sucks at the cud of the Medicaid cash cow. Meanwhile, eager for promising off-label research results, the big pharmaceutical companies are writing their checks to the esteemed Harvard institution. Senator Grassley, now would be very good time to look into these matters more closely.
Some few other American legislators have taken notice of the problem. Currently before the New York State Committee on Children and Families is a Bill that may provide some measure of relief to families who may find themselves facing accusations of Munchausen’s Syndrome by Proxy, or its latest variant, Medical Child Abuse.
New York State Assembly Bill A3365-2013 bears this concise description:
Provides that a child shall not be taken into protective custody based on an allegation that a custodial parent or guardian suffers from Munchausen syndrome by proxy without a family court hearing on such allegations.
The proposed Bill, would modify section 417 of the State’s Social Services Law. It is difficult to say whether it has a chance of passage. If it passes, that would be one small step forward in the right direction.
Meanwhile, a nation watches in stunned silence, waiting for a hero to arrive just in time to rescue a beautiful young girl from the tragic fate that seems to await her. May she be the very first of many rescued from that fate.
1 Gail Atkinson, RN, BSN,, “Child Abuse & Ethics: Working Through Dilemmas In Mandatory Reporting,” (Corexcel, Online continuing education for nurses, Undated.
3 Cynthia Hubert, “Mom to Get $800,000 in 1997 Death of Son: State, Mono County Agree to Pay,” Sacramento Bee, October 7, 1999.
5 Geoffrey Fattah Fattah and Andrew Marshall, “Jury to Put Price Tag on Family’s Suffering in DCFS Suit,” Deseret Morning News, June 29, 2007.
9 Alexandra Gross, “Yvonne Eldridge,” in National Registry of Exonerations (University of Michigan Law School and the Center on Wrongful Convictions at Northwestern University School of Law), accessed April 12, 2014.
10 William R. Long, M.Div., Ph.D., J.D.,, “Munchausen Syndrome By Proxy/Factitious Disorder By Proxy,” July 12, 2008. See also Michael S. Perry, “Patricia Stallings,” in National Registry of Exhonerations University of Michigan Law School and the Center on Wrongful Convictions at Northwestern University School of Law, n.d.).
11 JD v East Berkshire Community Health NHS Trust and others,  UKHL 23, citing Venema v Netherlands,  39 EHRR 102.
13 Sobotkin, RN, BSN,, “Child Abuse & Ethics: Working Through Dilemmas In Mandatory Reporting.” See note 1.
18 Corey M. Perman, “Diagnosing the Truth: Determining Physician Liability in Cases Involving Munchausen Syndrome by Proxy,” Wash. UJ Urb. & Contemp. L. 54 (1998): Corey M. Perman, “The Suspicious Physician – Legal Protections and Ramifications for the Medical Community in Identifying and Treating Munchausen Syndrome by Proxy,” Epstein Becker and Green PC, promotional brochure, 2007.
19 Lynne Wrennall, “Misdiagnosis of Child Abuse Related to Delay in Diagnosing a Paediatric Brain Tumour,” Clinical Medicine Insights: Pediatrics 2008, no. 1 (May 20, 2008).
21 Virginia T. Sherr, “Munchausen’s Syndrome by Proxy and Lyme Disease: Medical Misogyny or Diagnostic Mystery?,” Medical Hypotheses 65, no. 3 (January 2005): 440-47, doi:10.1016/j.mehy.2005.04.009.
23 Murat Topbaş et al., “Epilepsy Prevalence in the 0-17 Age Group in Trabzon, Turkey,” Iranian Journal of Pediatrics 22, no. 3 (September 2012): 344-50.
24 Anne T. Berg, Tobias Loddenkemper, and Christine B. Baca, “Diagnostic Delays in Children with Early Onset Epilepsy: Impact, Reasons, and Opportunities to Improve Care,” Epilepsia 55, no. 1 (January 1, 2014): 123-32, doi:10.1111/epi.12479.
25 See for example Vincent J. Palusci, “Updates for Primary Care Providers” (presented at the 19th Annual Medical Conference on Child Abuse and Neglect, Kellogg Hotel and Conference Center, Michigan State University, April 23, 2014); Driscoll Children’s Hospital, “Child Abuse Summit 2014,” conference brochure and schedule for event held on April 17, 2014.
26 Tam Dang-Tan and Eduardo L. Franco, “Diagnosis Delays in Childhood Cancer,” Cancer 110, no. 4 (August 15, 2007): 703-13, doi:10.1002/cncr.22849.
27 M Dixon-Woods et al., “Parents’ Accounts of Obtaining a Diagnosis of Childhood Cancer,” Lancet 357, no. 9257 (March 3, 2001): 670-74, doi:10.1016/S0140-6736(00)04130-1. See also Rachel T Clarke et al., “‘Shouting from the Roof Tops’: A Qualitative Study of How Children with Leukaemia Are Diagnosed in Primary Care,” BMJ Open 4,no. 2 (2014) (“Some parents believed GPs failed to listen to their anxieties and discounted their expert knowledge of their child. Specific delay factors included lack of continuity of GP; some GPs’ reluctance to take blood from children; and some parents feeling unable to voice effectively their concerns”).
28 Rachel T Clarke et al., “‘Shouting from the Roof Tops’: A Qualitative Study of How Children with Leukaemia Are Diagnosed in Primary Care,” BMJ Open 4, no. 2 (February 18, 2014), doi:10.1136/bmjopen-2013-004640.
29 Daniel P Davis et al., “The Clinical Presentation and Impact of Diagnostic Delays on Emergency Department Patients with Spinal Epidural Abscess,” The Journal of Emergency Medicine 26, no. 3 (April 2004): 285-91, doi:10.1016/j.jemermed.2003.11.013.
30 Lauren Limb, Stephan Nutt, and Alan Sen, “Experiences of Rare Diseases: An Insight from Patients and Families” (Rare Disease UK, December 2010).
32 Shire plc, “Rare Disease Impact Report: Insights from Patients and the Medical Community,” April 9, 2013,.
33 The extent to which a disease is generally recognizable is related to the amount of media attention that it receives. By way of example, muscular dystrophy became a well known disease largely as a result of the efforts of comedian Jerry Lewis and his popular telethons, which he hosted for 45 years. For a disturbing glimpse at the politics behind the popularization of diseases see generally Richard Zoglin, “Why Did Jerry Lewis Leave the Telethon?,” TIME, August 16, 2012.
34 Germana Moretti et al., “What Every Psychiatrist Should Know about PANDAS: A Review,” Clinical Practice and Epidemiology in Mental Health 4, no. 1 (May 21, 2008): 13, doi:10.1186/1745-0179-4-13.
35 A. Ohtake et al., “Diagnosis and Molecular Basis of Mitochondrial Respiratory Chain Disorders: Exome Sequencing for Disease Gene Identification,” Biochimica et Biophysica Acta (BBA) – General Subjects 1840, no. 4 (April 2014): 1355-59, doi:10.1016/j.bbagen.2014.01.025.
36 Christina Liang, Kate Ahmad, and Carolyn M. Sue, “The Broadening Spectrum of Mitochondrial Disease: Shifts in the Diagnostic Paradigm,” Biochimica et Biophysica Acta (BBA) – General Subjects 1840, no. 4 (April 2014): 1360-67, doi:10.1016/j.bbagen.2013.10.040.
37 Vassilios N. Kotiadis, Michael R. Duchen, and Laura D. Osellame, “Mitochondrial Quality Control and Communications with the Nucleus Are Important in Maintaining Mitochondrial Function and Cell Health,” Biochimica et Biophysica Acta (BBA) – General Subjects 1840, no. 4 (April 2014): 1254-65, doi:10.1016/j.bbagen.2013.10.041.
38 Neil Swidey, “The PANDAS Puzzle: Can a Common Infection Cause OCD in Kids?,” Boston Globe, October 28, 2012.
39 Guy E. Brannon, Eduardo Dunayevich, et al., “Factitious Disorder Imposed on Another,” Medscape, December 12, 2013, . See also Dr. Helen Hayword-Brown, “MSBP and Medical and Expert Testimony” for additional risk factors for accusations of MSBP. Note 12.
40 Roesler and Jenny, Medical Child Abuse: Beyond Munchausen Syndrome by Proxy.
41 Nott, “Justice out of Balance.”
42 Pankratz, “Persistent Problems With the Munchausen Syndrome by Proxy Label.”
43 Levin, “Syndrome Diagnoses Spark Parental Lawsuits.”
44 Spence, Sean A., Catherine J. Kaylor-Hughes, Martin L. Brook, Sudheer T. Lankappa, and Iain D. Wilkinson. “‘Munchausen’s syndrome by proxy’or a ‘miscarriage of justice’? An initial application of functional neuroimaging to the question of guilt versus innocence.” European Psychiatry 23, no. 4 (2008): 309-314.
45 Ayoub, Catherine C., Randell Alexander, David Beck, Brenda Bursch, Kenneth W. Feldman, Judith Libow, Mary J. Sanders, Herbert A. Schreier and Beatrice Yorker, “Position Paper: Definitional Issues in Munchausen by Proxy APSAC Taskforce on Munchausen by Proxy, Definitions Working Group,” Child Maltreatment 7, no. 2 (May 1, 2002): 105-11, doi:10.1177/1077559502007002002. Publishing and promoting their perspective provides no difficulty, as APSAC owns the Child Maltreatment journal.
46 Ayoub et al., “Position Paper.”
47 Margo Rosenbach, “Children in Foster Care: Challenges in Meeting Their Health Care Needs Through Medicaid” (Mathematica Policy Research, Inc., March 2001); “Foster Care: Health Needs of Many Young Children Are Unknown and Unmet,” May 26, 1995; The Children’s Partnership, “Improving Health Outcomes for Children In Foster Care: The Role of Electronic Record Systems,” issue brief (January 2009);
48 House of Lords, Sudden Infant Deaths, Hansard, Vol 657 cc172-5. (January 7, 2004). Among the best summations of events concerning the MSBP diagnosis in England up to 2004 is that of the Hon. Mr. Justice Munby handing down judgment in Kent County Council, Re B (A Child) v the Mother & Ors  EWHC 411 (Fam) (providing thoroughgoing analysis of events including confidentiality of family court proceedings, provision of evidence to media, injunction against BBC by municipality, status of Sir Roy Meadow, complaints filed against and resulting public perception of experts, Cannings and Patel cases); Dr. Helen Hayward-Brown, “Munchausen Syndrome By Proxy (MSBP): Some Medico-Legal Issues,” Judicial Officer’s Bulletin, (June 2004) and Michael Nott, “Justice out of Balance,” Nexus Magazine (Oct – Nov 2004).
49 Melissa Kite, “We Can’t Reunite Thousands of Mothers with Children Wrongly Taken from Them,” The Telegraph, January 18, 2004.
51 Miles v. Child Protective Servs. Dep’t, 102 Wash.App. 142, 6 P.3d 112 (2000), review denied, 142 Wash.2d 1021, 16 P.3d 1266 (2001).
52 “Munchausen’s Syndrome By Proxy: Suit Thrown Out Over Placement Of Children In Foster Care,” Legal Eagle Eye Newsletter for the Nursing Profession, November 2000.
53 Yuille v. DSHA, 45 P. 3d 1107 (Washington Court of Appeals, 3rd Div. 2002). See also e.g. Ross v. Louise Wise Services, a New York case decided in 2006, where the court found that the “plaintiffs have demonstrated the existence of facts which, if proven at trial, establish a pattern of conduct, aimed at the public generally, that evinces a wanton indifference to the right of prospective adoptive parents to make an informed decision to proceed with adoption.” The defendant did not deny that it routinely withheld such information from prospective adoptive parents, “conceding that this was its standard practice at the time.” In Mallette v. Children’s Friend and Services, the court held that when an agency undertakes to furnish the family and medical history of adoptee, it has duty to do so accurately. In Gibbs v. Ernst, the Pennsylvania Supreme Court recognized a cause of action for negligent failure to disclose information. In McKinney v. State, the Washington Supreme Court reached a similar conclusion, recognizing a claim against an adoption agency for negligent failure to disclose mandated information. In Wolford v. Children’s Home Society of West Virginia, the court recognized claims for fraud and negligence in an adoption case. In M. H. v. Caritas Family Services, Lutheran Social Services of Minnesota, Catholic Charities of the Archdiocese of St. Paul and Minneapolis, and Children’s Home Society of Minnesota joined the defendant as amicus curiae, arguing that the deliberate withholding of information about an adoptive child’s background makes for sound public policy. In Roe v. Catholic Charities, the defendants argued that disclosure of information to the adoptive parents would have violated public policy. In Meracle v. Children’s Service Society, the defense argued that public policy precluded an action against an adoption agency for negligent misrepresentation. Similar arguments were raised in Michael J. v. Los Angeles County, and in Mohr v. Commonwealth, a Massachusetts wrongful adoption case.
55 A thematic analysis of the experience, views and concerns of some of the parents whose children received care from Leeds Teaching Hospitals NHS Trust Children’s Cardiac Services between 2009 – 2013. Mortality Review and the Family Experience Review. NHS England. March 13, 2014.