Parents Against Injustice
CASE REPORT
Misdiagnosis of Child Abuse Related to Delay in Diagnosing
a Paediatric Brain Tumour(c)
Dr. Lynne Wrennall
Public Health Research Group, Criminology Programme, School of Social Science, Liverpool John
Moores University, Clarence Street, Liverpool, United Kingdom, L3 5UG.
Abstract: Conflicting opinion regarding the relative weight that should be allocated to the investigation of organic causes
of child illness, compared to the pursuit of suspicions of child abuse, has generated considerable public debate. The discourse
of Munchausen Syndrome by Proxy/Fabricated and Induced Illness is at the centre of contention. In particular, concern has
arisen that children's medical needs are being neglected when their conditions are misdiagnosed as child abuse.
This paper documents a case study in which the use of Child Protection procedures was linked to the belief that the
child's illness had "no organic cause." The case study is contextualised in a review of literature relevant to the diagnostic
process.
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. Strategies involving empathy, mediation, negotiation and conflict resolution may
provide a more appropriate and therapeutic alternative to the use of Child Protection procedures in cases where the diagnosis
is contentious. The need to re-write relevant policy, protocols and guidance is imperative.
Keywords: delayed diagnosis, miscarriages of justice, intracranial neoplasm, medical error, human rights, service user
perspectives
Background
Diagnosis of child abuse in the medical context has been highly contested for some time (Hayward-
Brown, 2003, 2004; Hayward-Brown et al. 2004). In the specific case presented here, the misdiagnosis
of child abuse involving the discourse of Munchausen Syndrome by Proxy/ Fabricated and Induced
Illness [MSbP/FII] displaced the medical knowledge necessary to assist a child.
The Child Protection discourse of MSbP/FII that permeated the exposit case was launched in an
article in The Lancet by the controversial paediatrician, Roy Meadow. Meadow (1977) presented two
case studies alleging that parents had fabricated and induced their children's illness. Since then, the
definitions of MSbP/FII have varied considerably across the literature and amongst differing professional
groups. Broadly put, the discourse of MSbP/FII is constituted by allegations of child abuse
centred around claims that parents and carers, usually Mothers, are harming children by causing them
to suffer a fictional or induced illness (Wrennall, 2007:961). Proponents of the discourse argue that
MSbP/FII is common, extremely dangerous and frequently fatal (Meadow, 1977; Davis et al. 1998).
The discourse has been implicated in some of the major murder trials involving women and in
numerous cases in the Children and Family Courts in English speaking countries around the world
(Wrennall, 2007). Subsequent critique of Meadow's evidence as an expert witness (Royal Statistical
Society, 2001; Nobles and Schiff, 2005; Streater, 2006: 7-11; Watkins, 2000) and the role of the discourse
in false allegations, Miscarriages of Justice and hostile adoptions, is now well known (Wrennall,
2007; Raitt and Zeedyk, 2004).
Correspondence: Dr. Lynne Wrennall, Ph.D., Coordinator, Public Health Research Group, Criminology
Programme, School of Social Science, Liverpool John Moores University, Clarence Street, Liverpool, United
Kingdom, L3 5UG. Tel: +44 (0)151 231 2121; Fax: +44 (0)151 231 3777; Email: l.wrennall@ljmu.ac.uk
http://cwis.livjm.ac.uk/SOC/69439.htm
Copyright in this article, its metadata, and any supplementary data is held by its author or authors. It is published under the
Creative Commons Attribution By licence. For further information go to: http://creativecommons.org/licenses/by/3.0/.
Clinical Medicine: Pediatrics 2008:1 1-12
Wrennall
MSbP/FII discourse has been critiqued on
several grounds. Morley (1995) and Baldwin (1996)
issued warnings about the non-specifi c diagnostic
criteria in MSbP/FII discourse. Baldwin (1996)
warned about the contradictory diagnostic criteria,
essentially setting up what have come to be
regarded as "ducking stool" criteria (Wrennall et al.
2003; Wrennall, 2007). Mart (1999) warned that
MSbP/FII is highly prone to misdiagnosis, on
statistical grounds. He has also criticized the
confusion between continuous variables and discrete
variables within the MSbP/FII discourse
(Mart, 2002).
Bergeron (1996) has criticized MSbP from a
feminist perspective, Wrennall (2005) highlighted
the role of the discourse in disempowering service-
users. Alison and Roberts (2000) have confronted
the use of the diagnosis on philosophical grounds.
In the context of a significant case study, Baldwin
(2005) has analysed the techniques of power that
are deployed in MSbP/FII narratives. Hayward-
Brown (2003) has assembled evidence suggesting
that the misdiagnosis of MSbP/FII is highly likely
in a context of failure in medical relationships.
Pankratz (2006: 90-95) reports that multiple problems
with the diagnosis continue unabated.
Alertness in regard to possible child abuse in
the medical setting is entirely appropriate. Increasingly
though, there is an awareness that Child
Protection procedures and specifically, the discourse
of MSbP/FII, are open to inappropriate use.
This awareness has stimulated major government
reviews in the UK (Goldsmith, 2004a, 2004b,
2007). Numerous critics have alleged that MSbP/
FII discourse has been deployed for ulterior
motives and camouflages agendas that are hostile
to the best interests of children (outlined in
Wrennall, 2007). D'Cruz (2004: 102) argues that
"the dominant medico-scientific paradigm underpinning
contemporary policy and practice is criticized
because claims of objectivity associated with
it mask profound political and discursive practices,
outcomes and consequences."
In the context of the critiques of Child Protection,
outlined by Parton (1991); Parton et al. (1997)
and Thorpe (1994); D'Cruz (2004) presented two
case studies, demonstrating how medical, social
and legal constructions in Child Protection marginalized
other valid knowledge claims, with
profound implications for children. Baldwin's case
study (2005) demonstrates the strategies and tactics
used to disenfranchise competing knowledge
claims, as does a case study presented by Urek
(2005). The exposit case study presented here,
follows this tradition and moves the argument
forward by providing strong evidence of the harm
to a child that can result when Child Protection
discourse displaces other valid knowledge claims.
The misdiagnosis in this case was contested by
service user advocacy at the time and was at odds
with a vast corpus of existing medical knowledge.
The relevant planks in that corpus are cited in this
paper.
Introduction
The paper presents a case study on misdiagnosis
and delayed diagnosis, contextualised in a review
of relevant literature on the assessment of Failure
to Thrive in relation to Intracranial Neoplasms and
Diencephalic Syndrome. The diagnosis of Failure
to Thrive is typically linked to the suspicion of
child abuse and neglect (Block et al. 2005). In the
exposit case, a child's long term Failure to Thrive
was interpreted in the context of MSbP/FII discourse
and was consequently misdiagnosed as
having "no organic cause".
The Child Protection perspective displaced the
medical knowledge that was necessary to assist the
child. Appropriate testing was not initiated in a
timely manner and hence the accurate diagnosis of
an optic chasm mass lesion involving the hypothalamus
and the medial temporal regions, resulting
in Diencephalic Syndrome, was delayed.
Diencephalic Syndrome was fi rst identifi ed by
Russell (1951). It is conceptualized by Fleischman
et al. (2005: 742) as a "rare but potentially lethal
cause of failure to thrive in infants and young
children." Clinical characteristics include "severe
emaciation, normal linear growth, and normal or
precocious intellectual development in association
with central nervous system tumors" (Fleischman
et al. 2005: 742).
The two main types of error evident in the case,
delay in diagnosis and failure to employ indicated
tests are among some of the most common types
of medical error noted by Leape, Lawthers,
Brennan, et al. (1993: 144-149) and included in
the Institute of Medicine's Report on Medical
Error, famously titled To Err is Human.
Rationale
This case is being presented for the purposes of
education and training and the relevance of the
Clinical Medicine: Pediatrics 2008:1
Misdiagnosis of child abuse related to delay in diagnosing a paediatric brain tumor(c)
experience to debate on Child Protection policy
and practice. The importance of publication is in
drawing out the contested approaches and suggesting
alternative more constructive responses
to these sensitive issues. Although there has been
extensive work published on Child Protection
disasters involving a failure to protect children
from abuse, there has been far less work on
examining the harm resulting from unnecessary
Child Protection interventions. Yet there is no
reason to assume that false allegations and miscarriages
of justice in Child Protection are less
numerous or less serious than cases of failure to
protect.
Specifically, there are five main reasons for
reviewing this case. First, the case provides practical
evidence of the harm to a child, caused by a
false allegation of child abuse. Second, the need
for adequate medical assessment to precede an
allegation of child abuse is emphasized. Third, the
warnings about the need to include Diencephalic
Syndrome in the differential diagnosis for failure
to thrive need to be communicated more fully.
(Ertem et al. 2000; Fleischman, 2000).
Fourth, evidence is presented, of a case in
which service user advocacy was more accurately
centred on the best interests of the child
than was the perspective from within the Child
Protection discourse. This is of considerable
interest in the current climate in which service
user perspectives are valorised. (Secretary of
State for Health 2004).
Fifth, more enlightened approaches are necessary
to resolve the current impasse regarding the
crisis of credibility surrounding the discourse of
MSbP/FII, (Hayward-Brown, 2003) and to more
generally resolve the crisis in Child Protection
(Parton, 2006). Many disputes that unfold through
the use of the Child Protection procedures could
be more effectively handled clinically. (Pankratz,
2006). Mediation, communication, negotiation and
conflict resolution provide appropriate and therapeutic
alternatives to the use of MSbP/FII discourse
in certain medical settings.
Over-reliance on n = 1 case studies should be
counseled against. However, an appropriate consideration
of individual case studies can be instructive
within the larger picture of policy and practice
considerations. Given the importance of this case
to current debate about policy and practice in Child
Protection, a detailed discussion of the aspects of
the case is imperative.
Methods
This paper presents a case study1 analysed in the
context of an extensive review of literature on the
appropriate assessment of Failure to Thrive in relation
to Intracranial Neoplasms and Diencephalic
Syndrome.
Research methods included interviews with the
child and her parents and observations of the family
in situ. Written documents prepared by the
parents, minutes of the Child Protection meetings
and all the available medical records were subjected
to textual analysis. Interviews with peer
analysts and numerous literature searches on differing
key words were also undertaken. Subject
validation of the manuscript by Melissa's parents
was achieved throughout the process.
Significant representative medical professionals
involved in the case declined to be interviewed
even though the parents had agreed to waive their
rights to confi dentiality, sufficient to allow interviews
to occur. These opportunities to be interviewed
were declined, presumably for the usual
legal reasons. However, the parents' account was
confirmed by the documents.
Chronology of the Case
Low and declining weight problems stimulated a
diagnosis of Failure to Thrive in a young female
child, whom we shall call Melissa. Symptoms
begin to be presented to medical and Home Visiting
staff from age four months, but the accurate
diagnosis of an optic chasm mass lesion involving
the hypothalamus and the medial temporal regions,
resulting in Diencephalic Syndrome is not obtained
until the child is aged fourteen months. Briefly
outlined, the case history is this.
Melissa [dob 24.1.2000] is referred to a Community
Paediatrician by her Primary Care Physician
on 6.9.2000 for Failure to Thrive. Weight is
being monitored by the Primary Care practice and
it is continuing to decline. She is not feeding well
and is regurgitating her food. It is reported that
Mum and Dad are feeding Melissa appropriately
and are "very competent parents."
On 26.9.2000 the Community Paediatrician
reports to the Primary Care Physician that she has
concerns about Melissa's "poor growth and her
current discomfort and very poor appetite."
1The child's name has been changed for anonymity. No other details have
been altered.
Clinical Medicine: Pediatrics 2008:1
Wrennall
Melissa's "birth weight was 6 lb 4 oz and she
remained on the 25th percentile until the age of
three months. She slipped to the 9th percentile
between 5 and 6 months but since then has plateaued
and more recently actually lost weight."
She "vomits small amounts occasionally but this
does not seem to be a major problem." The Community
Paediatrician also points out that Melissa
"has become less settled and having previously
slept through the night has been waking crying
with pain during the night." Bloods were taken "for
a number of investigations including antiendomesial
antibodies to exclude Coliacs disease and to
check liver and kidney function as well as a full
blood count and iron levels." Urine microscopy
was reported to be normal "again" and the family
were asked to collect stool sample to test for "ova,
cysts and parasites and reducing substances."
The Community Paediatrician's letter dated
15.10.2000 to the Primary Care Physician reports
that Melissa "appears to become uncomfortable
whenever eating" and is "waking during the night
apparently in pain." Her thinness and wasting is
contrasted to her alertness. The Community Paediatrician
makes a referral to Paediatric Gastroenterology
specialists who institute several attempts
to modify Melissa's diet, including naso-gastric
feeding and in-patient treatment.
In November, the parents express their concerns
over the paucity of diagnostic investigations, the
lack of an effective diagnosis and the inadequate
effects of treatment. On 28.11.2000 a Specialist
Registrar in Community Paediatrics reports to the
Primary Care Physician that Melissa's mother is
concerned that there is still no diagnosis despite
the hospital referral. The next day, Specialist
Registrar notes report the father expressing a
concern that Melissa may have bowel cancer. The
Mother is criticized over her lack of confidence
in naso-gastric feeding as the solution to Melissa's
problem. The notes also report Melissa's mother
saying that she will not be happy until she has a
second opinion from another Paediatrician in
another hospital. Gastro Round notes on 1.12.2000
express concern about interaction with the
family. On 11.12.00 medical notes document a
meeting to address the parents' "list of problems
and grievances".
In early December, the suspicion of child abuse
held by medical and nursing staff hardens into a
more formal recourse to Child Protection procedures.
Detailed procedures are set down for
communications with the family and among the
professionals. A date is set for a "multidisciplinary
meeting" on 11.12.2000. As the month progresses,
Melissa's medical condition goes into further
decline. December ends with a Doctor's Urgent
Care report being drawn up in respect of Melissa's
"malnutrition" and "chest infection".
A planning meeting among the medical personnel
and a Paediatrician from the hospital Child
Protection Unit takes place 22.2.01. Case notes
report that there is "Unanimous agreement that the
only acceptable course is for hospital admission."
There will be liaison with Social Services "as
necessary." Twelve professionals are reported to
have attended. [The Senior Consultant Paediatrican
from the Child Protection Unit is subsequently
arraigned before the General Medical Council's
Professional Conduct Committee regarding numerous
false allegations of child abuse, unrelated to
the exposit case.]
On 27.2.01 Melissa's nystagmus is reported to
have been observed by the Home Visitor from the
Primary Care Practice and on 1.3.01 mention of
the nystagmus is made in case notes. A referral is
made to a Paediatric Neurologist. Despite the
documentation of the nystagmus, Melissa is to be
admitted to hospital under the supervision of the
Senior Consultant Paediatrician from the Child
Protection Unit. Before the Paediatric Neurologist
has assessed the child, a Child Protection Strategy
meeting is held on 2.3.2001 between the medical
staff and the Social Services Department from the
Local Authority. The minutes of the strategy meeting
note that "a medical perspective regarding
[Melissa's] needs has been thoroughly investigated
by paediatrician and consultants." It is reported
that "All medics concerned are of the opinion that
there is no organic cause for [Melissa's] faltering
weight." At this meeting it is decided that a Care
Order would be sought from the Family Court in
respect of Melissa.
Later in the day, a clinical assessment by the
Paediatric Neurologist confirmed by MRI scan
establishes that Melissa is suffering from an optic
chasm mass lesion involving the hypothalamus and
the medial temporal regions, resulting in Diencephalic
Syndrome. Consequently, legal proceedings
against the family are withdrawn.
The Paediatric Oncologist reports that the MRI
scan revealed a presumed hypothalamic glioma
which was then stereotactically biopsied showing
a pilocytic astrocytoma. "There was one mitosis
Clinical Medicine: Pediatrics 2008:1
Misdiagnosis of child abuse related to delay in diagnosing a paediatric brain tumor(c)
in the field and one Rosenthalor fibre among the
tumour cells and no evidence of necrosis." Melissa
subsequently "underwent a years worth of
chemotherapy on Vincristine and carboplatin."
"However in October 2002 there was a progression
of the tumour and we elected to treat her with
radiotherapy that commenced in January 2003."
During the radiotherapy a cyst developed that had
to be drained. An MRI scan showed a post-radiation
"reduction in the size of her recurrent tumour which
was in the region of 30%-40%."
Sadly, a scan in February 2005 shows an
increase in the size of the tumour. Melissa underwent
surgery in April 2005. A left frontal craniotomy
with a midline approach was performed,
but "the tumour was unfortunately indistinguishable
from the optic nerve." Although some tumour
was removed, Melissa "subsequently has lost useful
vision in her right eye (post surgery)." Useful
vision in left eye has been retained with "decreased
visual acuity." She is being referred for further
investigation in the United States.
Some nine months elapsed between symptom
onset and eventual accurate diagnosis. When the
symptomatology of the case is assessed against
the available knowledge, the delay is found to have
been avoidable.
Discussion
I will address the significant questions, issues and
evidence relating to the case, in the context of the
relevant research.
The Frequency of Neoplasmsin Babies and Children
One of the most important issues arising from the
case, is the relative emphasis that should be placed
on suspecting organic disease, as compared to
suspecting child abuse. At the centre of this issue,
is a question about the attention that ought properly
be paid to the risk of diseases perceived as rare.
The frequency and outcome of Neoplasm in children
are therefore significant factors to be weighed
in the balance. Young et al. (2000: 2144) point out
that: "Although cancer has an annual incidence of
only about 150 new cases per 1 million U.S. children,
it is the second leading cause of childhood
deaths." In the U.K. Stiller et al. (2004: 13) report
that cancer accounts for "around 20 per cent of all
deaths among children aged 1 to 14 years."
"It is a fact that in the United States and in
most economically advantaged countries of the
world, cancer kills more children over the age of
six months than does any other disease" (Beyer,
1990: 2). "Cancer accounts for more deaths than
any other disease and is the second most prominent
cause of death among children and young
people aged 1-14" (Parker et al. 1997: 20).
Cancer is, as Beyer (1990: 2) reports, "the number
one disease killer in children from late infancy
through early adulthood." It is "the leading medical
cause of death in both males and females from
age 1 to 34." (Beyer, 1990: 2). Drawing on the
work of Parker et al. (1997: 20) and Young et al.
(2000: 2144), Parisi et al. (1999: 283-297) reiterate
this finding. "With the exception of accidents,
childhood cancer is the most common cause of
death in persons under 15 years of age (excluding
the neonatal period) in the United States." Parisi
et al. (1999: 283-297).
Given this level of frequency and the seriousness
of outcome risk, it is prudent to consider
cancer in the differential diagnosis of otherwise
unexplained illness in children, particularly where
symptoms are congruent with a diagnosis of cancer.
There was a high degree of congruence between
symptoms and the eventual, albeit delayed diagnosis
in the exposit case.
The Frequency of CNS Cancers
CNS cancers "are the second most frequent malignancy
in childhood and the most common of the
solid tumours" (Gurney, Smith and Bunin, 1999:
51). "Astrocytomas account for 49.6% and 52.25
of CNS malignancies in children and young people
under the ages of 15 and 20, respectively" (Gurney,
Smith and Bunin, 1999: 53). "The average annual
incidence of CNS cancers" varies only slightly by
age from infancy to age seven and is higher in
young males and among white children (Gurney,
Smith and Bunin, 1999: 51-55).
Kumar, Jones and Tekkok (1990: 327) report
that "The incidence of intracranial tumour was 1
in 25,000 live births, and 85% of the tumours
were malignant." Visudhiphan, Chiemchanya and
Dheandhanoo (1989: 72) found that brain tumors
were the second most common neoplasm of childhood.
Intracranial Neoplasm may be present in
neonates and may form pre-birth. (Takaku, Kodama,
Ohara, Hori, 1978: 365) reported "5 cases of brain
tumor in newborn babies under 2 months."
Clinical Medicine: Pediatrics 2008:1
Wrennall
The rate of CNS cancer has been increasing over
the last two decades (Gurney, Smith and Bunin,
1999: 55). CNS cancers do not share the favourable
prognosis of most other pediatric cancers and the
overall survival rate, excluding astrocytomas "is
probably less than 60%" (Gurney, Smith and
Bunin, 1999: 55). "Leukemias and brain cancer
accounted for 57% of cancer deaths in US children"
(Ries, 1999: 166).
The Importance of Early Diagnosisof Paedeatric Neoplasm
The literature substantiating the importance of
early diagnosis in this field, is extensive. In their
review, Young, Toretsky, Campbell and Eskenazi
(2000: 2144) argue that: "Early detection and
prompt therapy have the potential to reduce mortality."
In advice that was written to prevent the type
of medical misadventure that occurred in Melissa's
case, Ertel (1980: 306) warns that
"since tumor-free survival so heavily depends
upon an early diagnosis, a high index of suspicion
must be maintained for commonplace nonspecific
symptomatology. The primary physician
must pursue critical aspects of the medical history
at the first suggestion of an atypical
course."
Similarly, Starling and Shepherd (1977: 144)
counsel that cancer in children,
"is often more insidious than in adults and may
well mimic many other diseases, developmental
processes, or childhood psychological problems.
The knowledge that cancer kills more children than
any other disease and the awareness of the presenting
symptoms and signs may well save a child's
life. Early detection with prompt, aggressive
therapy is of paramount importance in achieving
cures in childhood cancer."
The rationale supporting early diagnosis contains
numerous factors. Early diagnosis "is absolutely
necessary for surgical treatment," according
to Takaku et al. (1978: 365). Tubiana and Koscielny
(1999: 295) emphasise that the "main advantage
of early diagnosis of cancer is the reduction of
tumor size at initial treatment and thereby an
increase in the proportion of patients without distant
dissemination". They established that the
relationships between early diagnosis and "tumor
size, histologic grade, and lymph node involvement
on the probability of distant spread" were highly
significant. Their model demonstrated how early
diagnosis could be successful in avoiding histologic
progression.
For Martinez Ibanez et al. (1992: 42) early
diagnosis and effective management of the side
effects of chemotherapy "are key factors in the
better prognosis and increased life expectancy"
of children treated for neoplasm during the first
year of life. "Early detection may improve patient
outcome because late diagnosis of a brain tumor
may affect brain tumor resectability, neoplasm
stage, and risk of cerebral herniation" according
to Medina, Kuntz and Pomeroy (2001: 255). "Early
detection of these tumors can reduce overall
morbidity and improve the patient's chances of
returning to a normal lifestyle" (Mason et al.
1996: 108).
Relationship factors are also important.
"Children with cancer and their families benefit
from early referral and a close working relationship
between the oncology team and the primary care
physician. In addition to providing or arranging
psychosocial support, the primary care physician
can assist in numerous aspects of care." (Young,
Toretsky, Campbell and Eskenazi, 2000: 2144)
These factors are further elaborated by Ertel
(1980: 306), "the primary clinician should maintain
close contact with the patient not only to
provide medical and psychological support, but
also to monitor the clinical response or side effects
of therapeutic agents and to serve as the patient
advocate at times of great personal and family
need."
There is extensive evidence that the benefi ts of
early diagnoses are numerous. Conversely, for
children whose diagnoses are delayed, the risks are
therefore considerable.
How Easy is It to DiagnoseIntracranial Neoplasm?
As adjuncts to clinical assessment, MRI and CT
scans are the most powerful, though not infallible,
tools for diagnosing the most common forms of
cancer in children. Considerable debate exists over
the relative merits of each and the point at which
radiological referral should occur. Citing Dunnick
and Connan (1994: 527-529) and McClennan
(1994: 29:S46-S50), Medina et al. (2001: 256)
point out that "CT traditionally has been the
imaging study of choice because of its availability
and lower cost per case. However, CT has
disadvantages, including posterior fossa beam
Clinical Medicine: Pediatrics 2008:1
Misdiagnosis of child abuse related to delay in diagnosing a paediatric brain tumor(c)
hardening artifacts and potential iodinated contrast
reaction."
On the other hand, they cite evidence from Bell
(1996: 10-25) and an American College of Physicians
Revised Statement regarding Magnetic
Resonance Imaging of the brain and spine (1994:
872-875) to establish that "MRI with its high
soft-tissue characterization, multiplanar capability,
and lack of ionizing radiation has emerged as the
technically optimal imaging modality. However,
its added cost and time, higher sedation rate, and
limited availability has hampered its universal use
as the first imaging modality." Medina et al.
(2001: 256).
Nevertheless, it can be argued that the difficulties
associated with radiographic diagnoses arising
from sedation, are not substantive. On the contrary,
they relate to the absence of appropriate protocols,
rather than to intrinsic pharmacological factors.
Beebe (2000: 205-210) established that when the
University of Minnesota protocol was used for
Magnetic Resonance Imaging of children, that
safety and accuracy were achieved over a three
year period. They report that "91.8% (525/572), of
the MRIs were successfully completed in 445
patients" and "There were no deaths or unexpected
admissions as a result of the sedation program."
It is most noteworthy in Melissa's case that the
Paediatric Neurologist was able to make a correct
diagnosis on clinical examination, that was later
verified by MRI scan. This demonstrates the importance
of referral to the correct specialism. A referral
was made to a Speech Therapist, with very
little justification, whilst a specialist Neurological
referral was signifi cantly delayed.
In What Circumstances Should
Testing for Intracranial Neoplasm
be Undertaken?
There is a general consensus in the literature that
Neurological assessment should precede Radiological
testing. There is less clarity regarding the
factors that justify specialist Paediatric Neurological
assessment. There is also considerable
difficulty in assessing children who are neither
ambulatory or vocal.
Lewis et al. (2002: 490) identify the main variables
"that predicted the presence of a space-
occupying lesion." These "included 1) headache
of less than 1-month duration; 2) absence of family
history of migraine; 3) abnormal neurologic
findings on examination; 4) gait abnormalities; and
5) occurrence of seizures."
Young and Salcman (1987: 149) report that
"Early general signs, such as headache, seizures
and psychologic changes, are followed by specific
localizing signs that can be elicited by meticulous
neurologic examination. A computed tomographic
scan should be obtained long before signs of
increased intracranial pressure appear."
Young et al. (2000: 2144) argue that "Diagnostic
imaging of the brain is recommended if headaches
are awakening a child from sleep, are
associated with neurologic signs (including seizures)
or occur with vomiting in the absence of a
family history of migraine."
The general position taken in Barnes' Editorial
(2002: 67), is that, "the key to properly "triaging"
these children, whether at initial presentation or on
follow up, is a thorough medical history and
physical examination, including a detailed neurologic
assessment."
Barnes (2002: 67) also points out that headache
is "a common and nonspecific symptom in childhood
and adolescence," "that when isolated is
diagnostically "low yield" for signifi cant pathology.
However, the significant pathology that may
be associated with headache is "high-risk" when
one considers the catastrophic outcome from a
delayed diagnosis, particularly for children with
space-occupying intracranial lesions (SOL)."
In their Cost-Effectiveness Analysis of Diagnostic
Strategies for assessing children with headache
suspected of having a brain tumor, Medina
et al. (2001: 255-263) argue that radiological scans
should be undertaken for those children assessed
as high risk due to an abnormal neurological
examination. Nowhere in their report is it indicated
whether they recommend that the neurological
examination be undertaken by a Paediatric
Neurologist or by a Primary Care physician. They
do not assess the relative risks of aneasthesia/sedation
following different protocols. Nor do they take
account of the data on incidental findings.
Incidental findings have now been found to be
significant in apparently healthy subjects, not
merely those referred for other suspected illness
(Kim et al. 2002: 1674). In a retrospective review
"of 225 conventional brain MR imaging studies
obtained during structural and functional brain
imaging research in a cohort of neurologically
healthy children (l00 boys [44%] and 125 girls
[56%]) ranging in age from younger than 1 month
Clinical Medicine: Pediatrics 2008:1
Wrennall
to 18 years... Incidental abnormalities were
detected in 47 subjects (21%)" (Kim et al. 2002:
1674) Of these, "17 (36%) required routine clinical
referral; a single lesion (2%) required urgent
referral." (Kim et al. 2002: 1674).
Incidental findings have been found to be so
significant that the entire issue of the American
Journal of Neuroradiology in which Kim et al.'s,
2002 article was published, was devoted to the topic.
The extent of indicative findings provides evidence
to support erring on the side of specialist referral
and testing in cases of unexplained illness.
Pain in the region of the head, vomiting, loss of
appetite and hyperactivity despite serious weight
loss were among Melissa's symptoms that were
congruent with brain tumour. Correct diagnosis
would have been made more difficult by her inability
to communicate verbally and by her non-
ambulatory status. However, these factors are
reasons for allocating greater care in assessing
whether organic disease is present. They do not
justify a pre-emptory resort to Child Protection
concerns. Since early diagnosis in this area can be
made with relative ease and modest expense,
appropriate testing is clearly more favourable than
the risk of misdiagnosis or delayed diagnosis.
Time Lapse Between Symptom
Onset and Diagnosis
The warning by Salander et al. (1999: 143) is apt:
"The time between experiencing symptoms and
treatment in cancer diseases is a time of insecurity
and despair. Brain tumour disease is a severe disease
with dramatic manifestations and it is important
that this time be kept as short as possible."
Several studies have measured the lag between
symptom onset and diagnosis. Flores et al. (1986:
684) found that "patients with brain tumors had a
significant delay from symptom onset to diagnosis."
Nevertheless "38% of primary brain tumors
were diagnosed within the first month after the
onset of symptoms." Visudhiphan et al.'s (1989:
102) Thai study, found that: "The duration of illness
before admission ranged from a few days to
4 years, with over 70 per cent within 3 months."
Pollock, Krischer, and Vietti (1991: 725) measured
"Lag time (the interval between symptom
onset and diagnosis)" "for 2665 children with
lymphoma or a solid tumor who participated in
Pediatric Oncology Group therapeutic protocols
from 1982 until 1988." They estimated that
"Median lag time ranged from 21 days for
neuroblastoma to 72 days for Ewing sarcoma."
Gatta et al.'s EuroCare study (2003: v119) concluded
that: "The Nordic countries represent a
survival gold standard to which other countries can
aspire. Since most childhood cancers respond well
to treatment, survival differences are attributable to
differences in access (including referral and timely
diagnosis) and use of modern treatments; however,
the obstacles to access and application of standard
treatments probably vary markedly with country."
Reasons for Delay in Diagnosis
The most significant findings in Pollock, Krischer,
and Vietti's (1991: 725) analysis of the factors
implicated in diagnostic lag were that "Type of
tumor and age were strongly associated with lag
time. Within diagnostic groups, age, gender, and
race failed to explain more than 16% of the variance
in lag time, suggesting that other factors may
play more prominent roles."
Ertem et al. (2000: 453-7) contest that "The
diagnosis of an intracranial mass is usually delayed,
because more common causes of wasting are
investigated at first." Not considering brain tumour
early in the diagnostic process can result in delayed
diagnosis (Young Poussaint et al. 1997: 1503).
"Salander et al. (1999: 143) reported that "'physician's
inflexibility' and 'physician's personal
values' were identified as obstacles on the pathway
to appropriate medical care."
In the exposit case, the mindset produced by
MSbP/FII discourse, displaced appropriate and
necessary medical investigations that could have
produced a timely and correct diagnosis.
Relationship Between Failureto Thrive (FTT) and DiencephalicSyndrome (DS)
Diencephalic Syndrome (DS) is one of the most
serious causes of Failure to Thrive (FTT). "The
most common feature of DS is severe FTT, which
is reported in all patients." Ertem et al. (2000:
453-7). In "infants with unexplained failure to
thrive, the diagnosis of diencephalic syndrome
should be considered. (Young Poussaint et al.
1997: 1504) Ertem et al. were concerned that
Diencephalic Syndrome had "received little mention
in pediatric gastroenterology literature" and
was often overlooked. Their report (Ertem et al.
2000: 453-7) was "intended to alert the pediatric
Clinical Medicine: Pediatrics 2008:1
Misdiagnosis of child abuse related to delay in diagnosing a paediatric brain tumor(c)
gastroenterologist who might have fi rst contact
with these children who have profound weight
loss." They emphasise the following:
"Diencephalic syndrome may easily be overlooked
in the differential diagnosis of FTT during
the first few years of life. Widespread use of
computed tomography and MRI has made the
diagnosis more easily and quickly obtained. Such
radiologic investigations should be included in the
work-up of an emaciated child when the reason for
the nutritional state is not clear.' Ertem et al. (2000:
453-7).
Summation
Matching of Melissa's symptoms with the indicators
of intracranial tumour indicates a high degree
of congruence. With appropriate assessment and
testing, the medical misadventure occurring in this
case was avoidable. The conclusion that there was
"no organic cause" for Melissa's condition, which
girded the Child Protection perspective, was made
prior to the appropriate tests having been undertaken
and was therefore pre-emptive.
The case presents evidence of delayed diagnosis
in an area where early diagnosis is particularly
important. The Child Protection approach to the
case is implicated in the delay in securing an accurate
diagnosis of the child's condition. Neoplasm
in babies and children is not so rare that it should
be excluded from the differential diagnoses in cases
where 'failure to thrive' is evident. Young, Toretsky,
Campbell and Eskenazi (2000: 2144) advise that
"Primary care physicians should be alert for possible
presenting signs and symptoms of childhood
malignancy."
The documents demonstrate the presence of two
narratives, the parents' and the professionals'. Very
little disagreement between the professionals is in
evidence up to the point where the services of a
Paediatric Neurologist were secured, some nine
months after the original symptoms appeared and
long after the Child Protection view had become
entrenched. The parents' desire for oncological
testing was appropriate to Melissa's real needs but
it was misconstrued through the judgmental narrative
of professionals on the case.
Appropriate parental behaviour was easily able
to be interpreted as falling within the MSbP/FII
profile, for example, requesting tests which medical
personnel felt were unnecessary, requesting a
second opinion, anxiety over the treatment being
enforced by the medical personnel, non-cooperation
with treatment that they believe is ineffective and
counterproductive. This shows the danger of overly
judgemental, imprecise discourse.
No counseling or pychosocial support was
offered to the family during what was clearly a
profoundly difficult time. The parents felt that their
child was dying of cancer and appropriate diagnostic
tests were not being undertaken. No empathy
for their plight is apparent in the documents
and despite criticism of their parenting skills, no
guidance on parent child interaction appears to
have been offered. Despite the clearly deteriorating
relationship between hospital staff and the parents,
no mediation services were sought.
Even when Melissa's nystagmus had been noted
by the gastroenterologists, the child protection
strategy continued unabated. A Paediatrician from
the Child Protection Unit, who has subsequently
been found by the General Medical Council to have
been responsible for numerous false allegations of
child abuse, was placed in charge of the child's
hospital admission. Fortunately, referral to the
Paediatric Neurologist was also made at this time
and this latter referral resulted in an accurate,
though tragic, diagnosis.
According to documentation, twelve professionals
attended the planning meeting and seven
attended the Child Protection Inter-agency strategy
meeting. Yet not one, appears to have placed on
the record, a concern that the parents' views ought
to be given serious consideration. Even though
Melissa's nystagmus was mentioned during the
strategy meeting, referred to as "shaking in the
eyes," it did not deflect the assurance that Melissa's
condition had "no organic cause." This phenomena
may be referred to as a manifestation of what Janis
and Mann (1977) termed "Groupthink" resulting
in "risky shift" thinking. The role of power in the
production of diagnostic 'truth' is evident. Baldwin
(2006) has also noted the role of "risky shift thinking"
in the case of another Child Protection misadventure.
If this type of misadventure is to be prevented,
change is needed. The case study supports
arguments for working in partnership. Concordance,
rather than authoritarian practice, would
have been more closely centred in the child's best
interests. Indeed, current European legal precedents,
re-enforce the need for working in partnership
with parents (for example, Venema v The
Netherlands and TP and KM v The United
Kingdom.)
Clinical Medicine: Pediatrics 2008:1
Wrennall
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. An accurate
diagnosis of the tumour pressing on her optic nerve
was thereupon obtained.
The full organic, social and psychological
implications for the child require long term assessment.
As a consequence of the delayed diagnosis,
significant pain relief and surgical, chemotherapeutic
and radiological treatment were delayed. This demonstrates
an unacceptably high degree of serious risk
and harm to the child. Erring on the side of suspecting
MSbP/FII was not erring on the side of the child.
Conclusion
The discourse of MSbP/FII has been linked to
medical, forensic and legal misadventure. In the
exposit case, the misdiagnosis of child abuse,
delayed accurate medical diagnosis and caused
serious harm to a child. It is imperative that suspicion
of child abuse does not displace appropriate
medical investigations.
Learning Points
•
The differential diagnosis should afford due
diligence to the consideration of the views of
service users and their advocates.
•
From the outset, the differential diagnosis
should allow for relevant rare medical conditions
of a serious nature.
•
Claims of "no organic cause" for illness are
vulnerable to refutation and should be avoided.
•
The threshold for referral to relevant medical
specialists should be lowered, especially where
pediatric neoplasm is, or should be, included in
the differential diagnosis.
•
Consultants should make Primary Care Physicians
aware of the limits to their knowledge and
suggest referrals to other specialisms where
appropriate.
•
A risk analysis should properly weigh the costs
of undertaking tests requested by service users
against the risk of delayed diagnosis.
•
Erring on the side of diagnosing child abuse,
may not "err on the side of the child." Judgmental
narratives can have an adverse impact on
accurate diagnostic practice.
•
The potential for "Groupthink" to produce
"risky shift" judgment in the context of Child
Protection multidisciplinary teams, needs to be
considered.
•
Strategies involving empathy, communication,
mediation, negotiation and confl ict resolution
should be trialed, in cases where suspicions of
child abuse have arisen,
•
Policy, protocols and guidance relating to
Munchausen Syndrome by Proxy/Fabricated
and Induced Illness must be re-written to better
protect the interests of health and social care
service users.
Further Research
Strategies involving empathy, communication,
negotiation and conflict resolution should be trialed,
in cases where there is no unequivocal evidence
of abuse. There may also be a case for
researching the deployment of these strategies in
cases where abuse is evident.
Sources of Support in the Formof Grants
I have received funding for my research in this area
from the University Research Fund and the School
of Social Science Research Fund at Liverpool John
Moores University.
Acknowledgements
I should like to acknowledge the inspiration that
Melissa provided and the kind assistance of her
family. The time and intellectual input that Joe Sim
devoted to the project is very much appreciated,
as is the astute and enlightened guidance of my
mentor, Steve Tombs. The reviewers from this
journal, also helped by building my confidence,
while simultaneously offering incisive and constructive
guidance. As always, Lord Howe's brilliance
shines over the best work I undertake.
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