Objective. To better understand the experiences, challenges, and adaptations of parents with children who have disfiguring facial hemangiomas.
Design. Qualitative, descriptive.
Methods. In-depth interviews were performed with the parent(s) of 25 children, aged 5 months to 8 years. Each child was referred to the Pediatric Dermatology Practice, Department of Dermatology, University of California, San Francisco, with a facial hemangioma of 1 cm diameter or greater. Interviews were ethnographic in style, centering on the description by parents of the particular challenges faced, supports received, and adaptive strategies developed in coping with their child's hemangioma. Analysis was by open coding of interview transcripts. Coded statements were organized within common categories and these further gathered into 4 principal themes: 1) parental emotion and adaptation; 2) experiences with public reactions; 3) issues related to parent-child interactions; and 4) expressed satisfaction/dissatisfaction with medical care.
Results. Disfiguring facial hemangiomas were found to be associated with parental reactions of disbelief, fear, and mourning, particularly during the growth phase. Reactions of strangers forced parents to confront varied aspects of social stigmatization. A broad array of effects on the parent-child interaction were observed, often connected with variables extrinsic to the hemangioma, including especially the support and acceptance by the extended family. Half of those studied expressed substantial dissatisfaction with aspects of their medical care.
Conclusions. Disfiguring facial hemangiomas in young children are frequently associated with parental reactions of loss and grief, despite the generally benign nature of the lesion and the prognosis for eventual involution. Physicians are faced with specific challenges in providing effective anticipatory guidance and support to parents.
Hemangiomas are the most common benign tumors of infancy, occurring in up to 10% of infants. They are three times more common in girls than boys, and in 60% of cases they occur on the head and neck.1 Hemangiomas are relatively unique among potentially disfiguring birthmarks because they are generally not present at birth and because they spontaneously involute. Most develop during the first few weeks of life, often starting as a tiny red dot, or with a blanched, erythematous, or bruised appearance to the skin. Their most dramatic growth occurs in the first few months of life, often followed by slower growth in the second 6 months of life. Thereafter, involution begins. Uncommonly involution may be completed by 2 or 3 years of age. Approximately 50% of hemangiomas have completely involuted by 5 years of age, 75% by 7 years of age, and 90% by 9 years of age.1 2
Although the natural history of hemangiomas is one of eventual involution, this is not necessarily good news to the parents of an infant whose physical appearance at birth is unflawed, but quickly becomes abnormal. Before their eyes they see their infant's perfect skin transformed by a bright red or blue spot, which grows rapidly and become protuberant. This, combined with the dynamic and often unpredictable nature of hemangiomas, can make the adjustment for parents particularly difficult.
Most pediatric training emphasizes the positive in the approach to the management of hemangiomas.3 4 Although hemangiomas uncommonly cause medical complications and virtually all involute eventually, approximately 40% to 50% do leave some residual skin changes including telangiectasias, hypopigmentation, and baggy, atrophic scars.5 6 Because involution occurs very slowly, the emotional impact on the family, particularly in an infant with a facial hemangioma can be great, even when a good prognosis is predicted.
The general adaptation of parents to the birth of an infant with a congenital malformation has been well-described7-12 but to our knowledge only two studies have directly observed the psychosocial impact of hemangiomas. Dieterich-Miller et al13 evaluated 19 children, aged 3 to 5 years, with hemangiomas on the head and neck using a standardized self-concept test, a child behavior checklist, and an informal interview. Although no significant differences were found between patients and age-matched controls, on informal interviews most parents expressed a desire to have the hemangioma removed before the child entered school. Many parents reported that strangers raised the question of child abuse, and several indicated that their children tried to hide their lesions from others. An interdisciplinary approach involving educators, health-care personnel, parents, and psychotherapists to help children cope with the disfiguring nature of this condition was suggested.14
Kunkel et al15 reported on a small (12 parents) support group for parents of children with hemangiomas. Compared with historical controls, these parents demonstrated significantly lower levels of psychological well-being, as well as lower scores on two mental health indices. Psychological distress was significantly associated with medical complications, but not with site of lesion or surface area.
In view of the paucity of information addressing a relatively common problem of infancy and childhood, we undertook this study to better understand how parents adapt and cope when their child develops a facial hemangioma. Because of the dissonance for parents between the dramatic appearance of the lesion and the typically benign prognosis they received, we wondered how parents managed the contradictions between their own sense of alarm and the assurances of physicians to watch and wait. The scant research regarding parental adaptation to hemangiomas led us to select a qualitative research design to gain a more in-depth understanding of the feelings and perceptions of parents undergoing this experience, as well as to help map the range and variability of their responses.
Parents were interviewed if their child had a facial hemangioma of 1 cm in diameter or greater. Parents of children <6 months were excluded. Twenty-five such children were recruited from the Pediatric Dermatology Practice of the Department of Dermatology at the University of California, San Francisco. The parents were usually notified of the project by one of the authors during the clinic visit, or were called shortly thereafter. Of note, no parent refused an invitation for an interview, and most expressed eagerness to participate.
The characteristics of the children in the sample are described in Table 1. Roughly half of the children were younger than 3½ years, with only 3 of school age. Twenty of the twenty-five were referred from physicians outside the University Medical Center. Single interviews were conducted with one or both parents. The characteristics of the parents interviewed are described in Table 2. The characteristics of the hemangiomas are described in Table 3.
At the time of the interview, most of the hemangiomas had begun to involute. There were 7 children in whom either involution was nearly complete or surgical removal had occurred. The hemangiomas in this referral population tended to be large, with 10 >4 cm in diameter at plateau phase. There were medical complications in 10 of 25, the most common being superficial ulceration. In 4 children an eye was partially occluded, leading to early treatment with systemic corticosteroids.
Interviews were conducted in person in 12 cases and by telephone in 13. The interviews ranged in length from 45 to 90 minutes. They were audiotaped and then transcribed verbatim. All interviews were conducted by the first author joined by one of the co-authors in 9 interviews. Interviews were ethnographic in style—that is, intended to understand the parents' experience from their point of view and in their own terms, centering on their description of the particular challenges they faced, the supports they received, and the adaptive strategies they developed in coping with their child's hemangioma.16Broadly speaking, the interviews were organized by the question: “What should clinicians know in order to understand the parents' and child's experiences in living with a hemangioma?”
Qualitative analysis of these transcribed interviews was then undertaken.17 Each parent statement, judged as meaningful, was coded with a conceptual label (open coding). Recurring themes derived from these labels were clustered into main, or core, categories. Each transcription was analyzed in its entirety for parent concerns and experiences that were described as having significant impact on them as individuals, or on their child or family. Five interviews were independently processed by two of the authors, one of whom had not participated in the interview to generate a list of reliable core categories. All interviews were then coded to this list of core categories. These categories were further organized into four overarching themes as follows: 1) parental emotion and adaptation; 2) experiences with public reactions; 3) parent-child interactions; and 4) expressed satisfaction/dissatisfaction with medical care.
Results are reported for parent responses within each of these identified four major themes. Table 4provides a summary of the more commonly described experiences.
Theme 1: Parental Emotion and Adaptation
In the majority of children, the early phases of growth of facial hemangiomas were associated with parental reactions of disbelief, panic and fear, and mourning similar to that seen in children with permanent congenital malformations.8 Disbelief was common, in part because of the postnatal onset. As one mother put it, “No that's not really happening … Are my eyes blurry?” A sense of panic, often felt during the growth phase of the lesion, was expressed by many parents as a worry that the hemangioma would never stop growing, would threaten a vital organ, or might result in severe bleeding. Reassurances from physicians were usually understood intellectually, but were reported as difficult to believe at this stage of the hemangioma.
Another common reaction was the sense of loss of the imagined child. A notion of flawed beauty was widely reported in connection with feelings of grief, loss, and a narcissistic wound felt keenly by several of the parent(s). As one mother put it: “At first I was self-conscious about it—here was this beautiful infant and there was this flaw in a way. I tried not to let it bother me because it is small when you think of the scope of medical problems a child can have. But I think it did bother me.” Another spoke poignantly of sadness at not experiencing the usual adulation that infants receive from strangers: “You know, it's like you want to have an infant that you can … show it around. That's why we decided to have another one soon, you know. At least then I can take her out.”
Guilt or self-blame was described in 10 of 25 interviews. These parents spoke of feeling personally responsible for causing the hemangioma, speculating that actions such as foods eaten, drugs or alcohol ingested, or even forbidden thoughts they might have had, could be the cause. Several parents also expressed a sense of personal shame, that the hemangioma might be interpreted as reflecting something intrinsically wrong with them as parents. These parents were particularly sensitive to the critical comments or actions of strangers, including the (often innocent) presumption that the child had suffered some external trauma.
Despite the fact that hemangiomas are common, many parents expressed asense of aloneness with the problem. Most parents said they had never seen a hemangioma before. This sense of isolation was also dependent on other factors including the outside support (or lack thereof), particularly from family and physicians.
The parents' reports of their own sense of acceptance of the lesion varied dramatically. As one would guess, this sense of acceptance was in large part dependent on the stage of the hemangioma and its cosmetic impact. However, this was by no means the only predictor. Some families continued to report a high level of anxiety and focus on the hemangioma years after the growth of the lesion had stopped. This was true of the parents of 2 of the 8 patients in whom the hemangioma had particularly low cosmetic impact at the time of the interview. Other parents developed a strongly articulated stance of acceptance, which was described by six of the families, including three with children whose lesions were significantly disfiguring. A parent of a child with one of the most disfiguring hemangiomas in the study stated: “She is a beautiful child … there's just something extra.” This child was entered in a baby beauty pageant (and won second place).
A factor that appeared to strongly influence early acceptance was the support offered the parents by their own parents and extended family. This support was often described in terms of their family's acceptance of the child, or their ability to look past the hemangioma. In contrast to this was a group of 7 families in which high continuing anxiety and focus on the hemangioma was expressed. All had in common a failure of support and acceptance from their own extended families. This frequently took the form of grandparents urging the parents to seek more active medical intervention, which parents sometimes interpreted as their own parents finding the child unacceptable.
Distinct from acceptance was habituation. Several parents whose child's hemangioma was beyond the growth phase commented that they “stopped seeing it” or that it came to seem insignificant, although as one mother put it: “Every once in awhile, when … I go to pick her up, I will suddenly see her fresh, as if this isn't my baby, and I will think—that thing really covers her face.”
Theme 2: Experiences With Public Reactions
In all but 1 case, the reaction of the public was a constant reminder of the hemangioma, and was described as a major stress for the parents in nearly two thirds of families. These reactions, which typically occurred in the grocery story, check-out lines, restaurants, and public parks, included stares, whispers, startles, inquiries, insensitive remarks, rude exclamations, looks of pity, questions about causality (especially re: trauma, infection, cancer, or a burn), and unsolicited advice or urging to have the lesion treated. In all cases where the hemangioma remained quite visible, parents spoke of such public reactions as being daily experiences.
Such reactions evoked a broad range of feelings, most commonly anger, hurt, a sense of aloneness, and helplessness. They spoke variably of their interpretations of strangers' reactions as indicating horror, disgust, curiosity, and pity. Most parents understood these reactions intellectually, but their repetitive, relentless quality made them difficult for many parents to handle. In 8 cases the hemangioma was given as a reason for avoiding taking the child out in public.
A sense of loss of anonymity was also reported. Goffman18 and MacGregor19 have both written of the ‘civil inattention’ that is normally conferred by strangers on one another that makes it possible to move anonymously and unhindered in public places.18 19 The parents in our study spoke of the notoriety the hemangioma created. Several commented that their child's hemangioma was routinely commented on by strangers in random public situations. This notoriety was described as intrusive and wearing.
Accusations of child abuse were also described. The parents of 9 children reported outright accusations by strangers, including 3 children for whom child protective services were actually contacted. Other parents described being highly sensitive to strangers who assumed that the hemangioma had a traumatic origin. Several commented that they felt that the stranger was implying that the parent had been abusive or neglectful.
Children were particularly singled out as reacting strongly to the hemangiomas, both with negative statements, “he looks ugly” or “eww, that's gross,” but also at times with innocent curiosity. Many were interested in touching the hemangioma.
Parents wrestled with the defining power of the words, actions, or attitudes of strangers. The varied manifestations of hemangiomas and lack of public understanding about them seemed to play into this. Upon hearing one man refer to her daughter's hemangioma as a “deformity” one mother thought: “My God, do people see this as a deformity? I never considered that that is what it was!”
Theme 3: Parent-Child Interactions
All parents expressed concerns about the long range effects on their child's development and self-image. We expected that, in their efforts to protect their child, we would see patterns akin to the vulnerable child syndrome20 in some families. In fact, almost all parents denied that the hemangioma had caused them to treat their child in any way differently, though some reported parent behaviors—such as not taking the child out in public—suggested otherwise.
A range of behaviors also existed with respect to parents teaching the child about the hemangioma. In most families, parents actively talked about the hemangioma, and taught toddlers a name for it, as though it were simply a body part. However, in 7 of the 21 children who were older than 2 years of age, the parents reported that they had not taught the child a name for it. Parents who did actively teach the child to name the hemangioma, also tended to be active in coaching her or him about how to handle public reactions. There were notable cases in which parents reported that this coaching had paid off. For instance, the mother of a 4-year-old reported: “The only time that I have ever seen him be put off was when a whole group of 5-year-olds got all their friends to come and stare. And then he sat there and told them these lines that I gave him, that he has had it since birth, it doesn't hurt him, it's going to go away someday, and he spit them out word by word and then looked away.”
This study afforded the opportunity to inquire about the development of awareness in the child of the facial difference. In eight interviews parents were able to recall that their child independently demonstrated awareness of the lesion by pointing to it in the mirror, or pointing and questioning where it should be on the parent or on another child. Onset of this awareness ranged from 12 months to 24 months of age. The child's social sensitivity about the hemangioma was reported as beginning to occur after 4 years of age. In 8 of 12 children over 3½ years of age, parents described teasing from other children that they witnessed or that their child reported to them. In most families parents reported low levels of upset shown by their child in response to the teasing. For children in preschool (n = 9) and elementary school settings (n = 2), parents reported that the hemangioma, after an initial familiarization stage, had ceased to be a focus of attention amongst the classmates.
Regardless of the age of the child, parents emphasized the normalization of interactions that went with being with familiars as opposed to strangers. Maximizing contact with stable familiars—that is, family, friends, and a stable preschool environment—was frequently relied on in day-to-day coping for the parent as well as the child.
Theme 4: Expressed Satisfaction/Dissatisfaction With Medical Care
Of the 25 families interviewed, 12 expressed general satisfaction with medical care provided by pediatricians and dermatologists, but 13 expressed strong dissatisfaction with either pediatric or dermatologic care or both (Table 5). This may be attributable in part to the referral nature of the population interviewed. Another contributing factor may be the dynamic nature of hemangiomas and the difficulty in giving a clear and accurate prognosis of outcome, particularly at the outset. This inherent difficulty may have lead to dissatisfaction with a plan of action and realistic predictions in particular.
More parents of children whose hemangioma had received active medical and/or surgical interventions reported dissatisfaction—of 11 children with interventions, the parents of 8 expressed dissatisfaction with care before and/or after the intervention. Of the 14 children in whom the lesion was observed untreated, 5 sets of parents reported general dissatisfaction. The necessity of intervention, often connected with real or potential medical complications, undoubtedly heightened the expectations and worry of the parents of these children.
Parents were eager to talk to us about their emotional reactions. As one parent said: “Doctors should talk to the parents like you are right now. Someone should ask you, ‘How do you feel about this?’ Nobody's ever bothered to check with me.” Certain positive comments also stood out: “He (the pediatrician) really supported us in seeing him as normal” and “The doctor told us, ‘The only person who’s got to learn to live with this is you—this is not bothering her.'”
This study demonstrates the significant impact that a facial hemangioma—a common pediatric problem—may have on the parents and family. Although parents are reassured that the condition is temporary, they must confront not only their own emotional reactions, but also strangers who repeatedly reinforce the stigmatizing nature of the condition.
We acknowledge that the results of this study were derived from the parents of children who, as a group, had relatively severe and disfiguring lesions that required medical or surgical intervention in >40%. Many of the parents—on average an unusually well-educated group—had actively sought referral to our tertiary care center. Although it may be argued that the self-selection involved in gathering this largely referred population may have resulted in some bias, we nonetheless recorded a wide spectrum of responses that were not predictable based on lesion size alone. It is this range of experiences and responses that a qualitative study attempts to provide.
Drawing from these interviews as well as from our experience with other families of children with hemangiomas, we believe that there are specific lessons to be learned regarding the anticipatory guidance and emotional support that should be provided to the parents of affected children. First, physicians must always recognize the dynamic nature of hemangiomas, particularly in the first few months of life. Despite reassurances to the contrary, the shock of seeing a perfect neonate develop a hemangioma is at the very least a cause for concern and for some parents is a devastating event. Hearty, blanket reassurances such as “Don't worry, she'll be just fine!” are, in our experience, not helpful.
A careful discussion of the natural history of the phases of a hemangioma, combined with a general sense of prognosis (if ascertainable at the time of the visit), should be given. Frequent visits to monitor the hemangioma in the first few weeks to months of life are imperative. Measurements and (when possible) photographs are helpful in objectively determining the rate of growth. Examples of before and after pictures of hemangiomas, particularly if similar to the patient's, are often the most powerful way to reassure parents of the likely good outcome. For most small hemangiomas, which require no treatment, this approach of active nonintervention is sufficient, but if a significant degree of anxiety or emotional distress continues, psychological counseling may be indicated.
Early on, predictions regarding the likely outcome (ultimate size, number of years to complete involution, and whether scarring will be present) are difficult, even for the most experienced of clinicians. What the physician can assure the family, however, is that he or she understands the disease process including its uncertainties, and will continue to reevaluate the hemangioma and emotionally support the family throughout, whether or not actual treatment is given.
Size, location, and rapidity of growth are the three most important determinants of the need for specialty care referral.2Parents of young infants (ie, <6 months of age) should always be warned about the possibility of an accelerated growth phase and asked to call for advice or an appointment if the growth appears to be very rapid, because this may alter treatment decisions in some cases.
The issue of which hemangiomas need to be treated and how is still a controversial one.1 2 21 When treatment options were very limited and included mainly X-irradiation and conventional surgical excision, most hemangiomas were best left untreated. Newer treatments including systemic and intralesional corticosteroids, α-interferon, advances in surgical techniques, and selective laser therapy have added treatment options that can be very effective, depending on the specific characteristics of the hemangioma. Nevertheless, most hemangiomas, particularly small ones on nonexposed areas, require no specific therapy.
Even in those cases where no treatment is necessary, a discussion of therapeutic options and their pros and cons can be helpful for parents. Many have access to large amounts of medical information (whether accurate or not) via the mass media or the Internet, and some may feel pressured to treat by other family members, even if they do not wish to do so. These discussions, along with an ongoing discussion of the feelings engendered by the hemangioma, are particularly important for parents with a high level of anxiety. This anxiety, rather than the characteristics of the hemangioma itself, may cause them to engage in medical tourism searching for a quick cure, making them vulnerable to an array of aggressive therapeutic options that may not be appropriate for their child's hemangioma.5
As the growth of the hemangioma slows, visits can be less frequent. In the period of involution, serial photographs are again helpful to document involution because the parents, who see the child every day, may not be able to perceive even a significant difference.
Interactions with family, friends, and strangers pose a major challenge for families. Parental adjustment was strongly correlated with support from the extended family, whose reactions varied from extremely supportive to very unsupportive, eg, in-laws blaming the mother for the infant's physical imperfection. Similarly the parents themselves may polarize, with one parent blaming the other, or with one parent wanting more aggressive medical or surgical intervention while the other parent adopts a wait-and-see approach.
The physician, whether pediatrician or dermatologist, has an important role to play in the anticipatory guidance of those extended family members who may be crucially important in supporting the parents and accepting the infant. By monitoring the adaptation of the family, including the extended family, the clinician may be better able to determine if there is a need for family or parental counseling.
Discussing the relentless nature of comments from strangers, which parents have or are likely to receive, is helpful. It acknowledges the pervasive nature of these intrusions and allows parents to air their reactions to them. Parents should also be warned about the likelihood that they will be accused, either in jest or seriously, of child abuse. This advance knowledge will help demonstrate to them that such comments are common and in no way a reflection on their actual parenting skills.
Some authors have recommended specific strategies to help cope with comments from strangers. One has been termed “reciprocal rudeness,” ie, “My problem is my hemangioma; your problem is your mouth.”22 Another is to hand out a business card that states: “My child has a hemangioma and is under the care of a physician. Thank you for your interest.”6 Such approaches need to be individualized so that the parents feel comfortable with the style of coping strategies they choose.
The parents interviewed in our study emphasized the value of finding a small and stable group for the parents and child to interact with on a regular basis (such as a playgroup, mothers group, or preschool), because after a brief period of time, the hemangioma usually ceases to be an important focus and the child can be seen as a person with a hemangioma rather than a hemangioma with a person attached to it. Once children are talking, it is often helpful to teach them the word hemangioma so that they can respond to queries from strangers themselves. Children are often extremely curious about the hemangioma and may be less inhibited about making overt comments, but they are usually satisfied to know that “it is a birthmark,” “it doesn't hurt him,” and “it will go away soon.” Educating teachers or other adult caretakers can also help set the tone for the reactions of children. A well-established network of support groups for parents of children with hemangiomas does not currently exist, but a few organizations have developed to address some of these needs, and such support groups, where they exist, can be very helpful to families.
Parents are understandably concerned about the psychological impact of the hemangioma on their child. Although this study focused on the experiences of parents, our clinical experience is that children may be aware of the physical presence of their hemangioma (ie, touching it repeatedly, pointing to it in the mirror) as early as 18 months of age, but they usually do not perceive it as making them different (in a negative sense) from other children until they are 4 years of age or older. Thus, we reassure parents about the impact in early years, as long as the parents themselves feel comfortable with the situation.
Because of developmental considerations, a reevaluation of the results of natural involution or treatment, as well as the psychosocial adjustment of the child and family should always be undertaken at 3½ to 4 years of age. If documented ongoing involution is occurring, a watchful approach may still be appropriate. If obvious telangiectasias, scarring, or atrophy are evident, intervention at this age (usually in the form of laser or surgical therapy) may be considered, to try to minimize the development of poor self-esteem.
To summarize, disfiguring facial hemangiomas are associated with parental reactions of disbelief, fear, and mourning, particularly in the growth phase. Reactions of strangers force parents to confront varied manifestations of social stigma, despite the temporary nature of the condition. A broad array of effects on the parent-child interaction can occur, often determined by independent variables intrinsic to temperament and family constellation. Finally, approximately half of those studied expressed substantial dissatisfaction with aspects of their medical care. We hope this study will provide clinicians with specific information that may be useful in anticipatory guidance of parents whose children are affected with this relatively common pediatric problem.
Dr Tanner's participation in this project has been supported in part by the Maternal and Child Health Bureau.
We thank the parents who agreed to participate in this study and share their personal experiences. We also thank Drs Mary Williams, Renee Howard, Gay Becker, and Tom Boyce for their review of the manuscript.
- Received April 29, 1997.
- Accepted November 18, 1997.
- Address correspondence to: J. Lane Tanner, MD, Division of Behavioral and Developmental Pediatrics, UCSF/Mt. Zion Medical Center, 2330 Post St, Suite 360, San Francisco, CA 94115.
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- Copyright © 1998 American Academy of Pediatrics