Chapter 98. Vulnerable Child Syndrome

In 1964, Green and Solnit1 described a group of 25 children ages 17 months to 14 years old with a history of a condition perceived, and oftentimes physician-endorsed, as life-threatening (eg, prematurity, seizures, congenital cardiac disease, pneumonia, diabetes mellitus, head trauma). Despite recovery, these children were then inappropriately considered by their parents to be at heightened ongoing risk for premature death. Although the majority of the precipitating illnesses occurred within the first 2 years of life, the parent–child relationship was persistently altered, generating in later years maladaptive behaviors such as separation difficulties, infantilization, bodily overconcerns, and school underachievement. Vulnerable child syndrome (VCS) is currently viewed as an extreme manifestation of persistent and unfounded parental expectations of medical vulnerability after a real or perceived health threat to a child. The high parental perception of child vulnerability (PPCV) significantly increases use of acute medical care, attention to behavioral and developmental problems, and parental distress.

The prevalence of vulnerable child syndrome is unknown and is difficult to measure. However, studies2,3 have documented that approximately 10% of children seeking care in pediatric ambulatory settings may be inappropriately perceived by their parents as vulnerable. Among 750 parents seeking medical care at four pediatric primary care sites and at a children’s hospital emergency department, 27% expressed concerns during an on-site interview that their child was especially “vulnerable.” However, for 40% of these “vulnerable” children (10.8% of the entire sample), there was no clinical evidence in the medical records of any health vulnerability.2 In another community-based sample of 1095 children visiting pediatrician offices, 10.1% were perceived as vulnerable by their mothers.3

Predisposing factors to high parental perception of child vulnerability may include parent factors (eg, history of infertility or miscarriage, postpartum depression, unresolved grief from the death of a close family member, hereditary disorder in the family, maternal psychological factors, limited social support), child factors (eg, prematurity,4,5 a congenital anomaly, difficult temperament, chronic illness), and threat of fetal or maternal death during pregnancy or delivery.1,6

In 1986, Green described variants of vulnerable child syndrome that included (1) the “illness-prone child” who has no underlying disorder to account for the numerous illnesses and injuries that result in medical attention7; (2) a parent who watches a child vigilantly for the earliest signs of a specific medical or behavioral disorder that affects relatives; and (3) a parent misconstruing a normal variation on a physical examination, a false-positive screening test result, or an apparently “abnormal” test result as indicating a serious problem with the child.6,8-10 Parents of children with chronic medical conditions who have an incomplete understanding of their child’s disease may overestimate the child’s true vulnerability. All these variants have in common the frequent use of health care services.

Boyce11conceptualized a “taxonomy of childhood vulnerability” in an epidemiological framework. The normal child has a low objective vulnerability with suitably low perceived vulnerability. Vulnerable child syndrome occurs when children with low objective vulnerability have inappropriately high perceived vulnerability. Although children with chronic disease and the illness-prone child have high objective vulnerability and high perceived vulnerability, the perceived vulnerability can be in excess of the true objective vulnerability.

High parental perception of child vulnerability (PPCV) often develops after an event at birth, persists through the preschool years,12,13 and then resolves a few years later.14 The earlier the event, the less severe that event needs to be to produce a high parental perception of child vulnerability (PPCV) and the more likely that high PPCV occurs.15 Treatments such as phototherapy for jaundice,16 formula changes for feeding problems,13 or hospitalization17 may reinforce the PPCV. Even a health screening procedure may elicit inappropriate concern when false positives or minor abnormalities are found.2 Mothers who are more anxious, who are less satisfied with their lives, and who have fewer social supports are more likely to view their children as vulnerable.4,5 In preterm infants, poor maternal adaptation to parenting and feeding prior to hospital discharge may predispose to high PPCV.18

Vulnerable child syndrome is a problem of parent-child development stemming from the parent’s maladaptation to the initial health incident; it is not a problem originating with the child. A parent may fear recurrence of the initiating problem or may believe this child is in danger but not his or her siblings (eg, unpredictable course, rapid decline in health status).2These fears and guilt are associated with expectations of disappointment in the child’s development (eg, toilet training, separation, school performance).1 Age-appropriate separation and individuation from the parent is inhibited. Acting overindulgent or overprotective, the mother hesitates to allow her child autonomy. The child may sense the parent’s worries and fears and may respond to inappropriate limit-setting with behaviors that reinforce those anxieties.1,5,7,15While these children stay attached and dependent on their mothers, they may display defiance, risk-taking, and hyperactivity, or they may develop functional somatic symptoms (eg, headaches, stomachaches) or avoid activities.4,15,19

Exaggerated separation problems are common due to an altered parent-child relationship.1,6 A parent who fears a child falling ill when they are not together may rarely let others care for her child or may awaken the child frequently at night to check on breathing or other signs of life.20 For the older child, separation challenges and an inability to concentrate on learning may produce school refusal and absence, somatic symptoms on school days, and poor school performance. Furthermore, because the parent is unable to allow her child autonomy and independence, she may become overindulgent or overprotective; she is unable to allow her child autonomy and may unnecessarily restrict the child’s activities. Discipline may be limited when a parent feels guilty or mistakenly worries about emotional or physical harm from responding to a tantrum. Dependent or defiant children may become aggressive with their parents by biting or hitting.

Some parents may be unable to judge the seriousness of their child’s symptoms and seek medical attention at the first signs of illness, prompting overuse of and dissatisfaction with acute medical services.2,3,21 In these instances, other factors should be considered, such as a family crisis (eg, marital discord, illness, death, loss), a lack of social support for the parent, secondary gain for the parent (eg, increased attention from family and friends), or fabrication of symptoms (eg, factitious syndrome by proxy; see Chapter 94).6

Among parents with children 2 to 5 years of age, high parental perception of child vulnerability persists after 2 years in 15% to 31% of cases.12 VCS does not appear to persist into school age when there are no current health problems.14

When any of the clinical signs or symptoms suggest vulnerable child syndrome (VCS) (see Table 98-1), the parental perception of child vulnerability (PPCV) should be assessed. Parents are frequently unaware of the connection between a prior health threat to their child and their own response to it. Clinicians can inquire with specific questions about past health events (eg, pregnancy, delivery, illness, injury, hospitalization, surgery, medical tests and procedures). Attention should be given to the parent’s emotions and recollections of the precipitating event, interactions with health care providers, responses to the event, and interpretation of its significance. Understanding the parent’s current understanding of the child’s health and ongoing medical problems, potential reinforcers of continued legitimate parental fears, as well as aspects of the social history that may contribute is useful. A significant residual emotional response to a past threat supports the diagnosis of VCS. The Child Vulnerability Scale3 and its modifications—the Vulnerable Child Scale4 and the Vulnerable Baby Scale22—were developed to facilitate research on PPCV and VCS. Although the Child Vulnerability Scalemeasures just the PPCV, an altered parent-child relationship, behavior problems, and high medical care use in conjunction with a high PPCV score indicates the presence of VCS. These short questionnaires can be used clinically to screen for PPCV.

A pediatric history taken through a clinical interview confirms the diagnosis, provides an opportunity for the parent to talk about experiences and concerns, and encourages a therapeutic alliance between parent and pediatrician. A complete physical examination with narration of normal findings in the parent’s presence can be beneficial in reassuring the parent about the child’s health and relieving anxiety.

A critical part of management occurs when the clinician provides a clear, accurate statement about the child’s health status. When it is appropriate, the clinician should inform the parent that the child is healthy. In other cases, an acute illness or a chronic health problem should be explained with an emphasis on expectations for the child’s recovery or amelioration of symptoms. By means of empathic interviewing and active listening, the clinician can guide the parent in understanding the association between the prior event and any current symptoms and concerns. Once a parent comprehends this link, she can be encouraged to set limits on the child’s undesirable behaviors, allow the child age-appropriate autonomy, and respond appropriately to symptoms. Follow-up appointments are planned in advance to provide consistent reassurance, guidance, education, and support. The parent’s ability to understand and accept the explanation and to change parenting behaviors determines the need for collaboration with a mental health professional.

Clear communication between a family and a clinician about the significance of any medical event that affects a child is essential, even when the clinician does not feel the event is serious. Primary prevention of vulnerable child syndrome can be accomplished by avoiding unnecessary tests, procedures, consultations, or interventions. Families with risk factors for vulnerable child syndrome need assurance of close monitoring, confirmation of a child’s stable health, and encouragement of age-appropriate autonomy and discipline. Normal family routines and age-appropriate play activities and opportunities should be emphasized. Information given to parents at the time of potential precipitating events often prevents anxiety and misunderstanding. This is especially important in this day and age of improved genetic screening tests22 and survival of premature infants and children with severe illnesses. Anticipatory guidance about typical behavioral problems after illness should include a warning against treating the child as vulnerable to further illness. Follow-up visits ensure that parents understand and adapt appropriately to health events. Families with frequent use or unclear reasons to access health services require further evaluation.

Clinicians who care for children have a powerful influence on families.19 Their words and actions can have immediate and enduring effects on parents and children. Clear and compassionate therapeutic communication is one of the most important and cost-effective tools in the prevention and management of vulnerable child syndrome.