Expecting a Limb Deficient Child: How Prenatal Diagnosis Changes the Needs in Counseling and Support for Families
Christiane de Tonnancour
Parent's reaction following the discovery of a child's congenital deficiency is in fact a mourning reaction to the loss of a dreamed ideal child. Patterns of perinatal mourning have been described by many authors, with a growing interest for mourning associated with prenatal diagnosis (Ben Soussan et al., 2006, Chaplin et al., 2005, Hunfeld et al., 1999, Jörgensen et al., 1985, Statham et al., 2000). With prenatal testing becoming more available and more sophisticated, congenital limb deficiencies can now be suspected and confirmed during the second trimester of a pregnancy. In our clinic, parents of limb deficient children usually report detection between the 12th and 22nd week, although Holder-Espinasse's study, 2003, p. 420, widens the range from the 11th to the 24th week.
The subject of this article is a reflexion about the mourning of the ideal child, as we try to compare parental reactions to neonatal and prenatal diagnosis. We believe that it is not only a question of starting the mourning process early or late. Prenatal diagnosis seems to change some of its patterns, and a key factor might be possibilities of resilience for attachment when it's challenged by the discovery of the anomaly.
Attachment is a complex process and it doesn't start suddenly at the birth of a child. Research tells us that it takes its roots in each parent's relational background and in their construction of the "ideal child" during pregnancy (Zeanah et al.,1985 and 1990).
Precursors to attachment
Parents have a whole pregnancy to dream about their "ideal child", and these precious dreams are precursors to parent-child attachment. However, they have their natural counterparts, as fantasies of losing the baby or giving birth to a malformed one are normal intruders in this happy conjuncture. The balance between serenity and anxiety during pregnancy is determined by many factors, and each situation is unique.
As months pass, the fetus manifests itself more and more strongly, especially when its movements are felt and when it can be caressed through the mother's belly. Research about attachment tells us that fantasies about the ideal child are mostly elaborated during the third trimester (Meyer et al., 1993, Zeanah, 1985 and 1990). Parents might already know the fetus' gender, have chosen its name and talk to it lovingly, but it's still a stranger, unseen, unheard and untouched.
At birth, this stranger is greeted at last. If everything goes well and the baby is healthy, the ideal child will leave the scene to the real one. Patterns of attachment, separation and individuation will progress throughout family life in a series of normal developmental stages and crisis.
Patterns of mourning when limb deficiency is discovered at birth
The first stage is acute and intense shock. The mother, father or both parents might refuse to touch or even look at the baby. The baby might be shoved away from parents, in a professional effort to regain "control" of the situation.
This shock is followed by a state of confusion, guilt and despair. Parents might feel unable to accept this damaged baby who destroys their construction of the ideal child. They feel guilty for rejecting their own child. Desperately needing an explanation for this disaster, they search in themselves the cause of the amputation, therefore having another reason to feel guilty. Of course, the question "Why our baby?" leads to anger and anxiety. Parents might see their baby's future shattered and feel unable to cope. In rare cases, readjustment is impossible: the perception of the child is reduced to the missing body part, and there is little ground for attachment to start.
Professionals might try hard to offer comfort, working more with their own subjective reactions than with scientific information. For example, one might minimize the situation, comparing it to more severe handicaps, therefore, denying the parent's right to their pain. Others might make unrealistic promises, describing super prostheses looking like real limbs and doing just the same. Another reported story is of parents being left alone with their anxiety because nobody knows what to do. Of course, parents might receive empathic support and realistic information, sometimes right from the delivery room or very soon after birth.
Then, around the time of discharge from the hospital, a period of deep sadness comes, with guilt and anxiety. Bringing sad news to the rest of the family, instead of the expected good ones, is not an easy task. Some grandparents, aunts, uncles and friends might be very supporting, helping with siblings for instance. However, we also hear about parents having to hide their own distress and be the ones to comfort everybody.
When parents and healthy baby come home, infant care claims realistic attention and distracts from focusing only on the missing body part. Parents start to pay attention to family characteristics noticeable in their infant's face, mimics or temperament. For some parents, the crisis is already resolved and complete recovery is reported in a matter of days. In our experience, fathers are more likely to report such a short period of distress.
For others, sadness remains, with guilt and anxiety. They become excessively alert to all bimanual activities and cannot imagine how their child is ever going to be able to live normally. First ventures outside are very challenging, especially for spring and summer babies. During late autumn and winter, many parents are very careful to hide missing body parts in mittens or snow suits, knowing of course that they are only "buying time". Hypersensitivity to strangers' looks and comments might be painful and lead to withdrawal conducts. Fear of future social exclusion and low self esteem for the child is often expressed, with correlating fear of not being able to help. Many parents also anticipate their child's possible blame in the future for the limb deficiency.
Eventually, sadness recedes in the background, while efforts to repair or compensate help parents to rebuild confidence. They search information about possible surgeries, prostheses and other means to compensate for the deficiency. With months passing, they see their child going through developmental milestones quite normally. Anxiety about a functional future might remain, but it is less acute and focuses on more specific details. Basic confidence in the child's capacity to reach adult autonomy begins to be restored. Gradually learning to cope with day to day situations, parents recuperate a feeling of competence to raise this child like any other one. They begin to think that, in time and if needed, they will be able to support him (her).
The mourning is resolved when parents renounce trying to make the pain disappear completely. The family leads an ordinary life, going through a succession of normal crisis, one at a time. The important thing is moving forward through a healthy attachment process, even if a few steps backwards are occasionally needed in some sensitive situations.
Patterns of mourning when limb deficiency is discovered in utero
If the diagnosis is confirmed in a single exam, we also start with an intense shock, but it is felt more like a threat, or anticipation of an impending disaster, instead of a "fait accompli". The ultrasonographer's attitude and choice of words are reported to be a major factor influencing parents' initial perception of the severity of the deficiency (Ben Soussan et al., 2006, Chaplin et al., 2005, Statham et al., 2000).
In most cases though, suspicion precedes confirmation, generating diffuse and growing anxiety, reaching a peak when diagnosis is confirmed. The intensity of the shock at the confirmation of the diagnosis will correlate with parental reactions and quality of support during the "waiting period". Parents will already have discussed the possible anomaly, if the suspected diagnosis was communicated clearly. The ultrasonographer will have more time to control his (her) emotional reactions and choose his (her) words. Then consultations with specialists will often be arranged. Immediately after confirmation of diagnosis, parents go through a stage of confusion, guilt, anger and despair. The damaged fetus destroys the parents' emerging construction of their ideal child. Feelings of rejection, guilt, anger and despair are quite similar to what is experienced by parents discovering the anomaly at birth, with some differences though. The appearance of the limb deficiency remains an abstraction. Unlike a full term newborn infant, the fetus is still a stranger and at this point of the pregnancy, the construction of the ideal child is vulnerable. If despair prevails, the fetus will be reduced to its limb deficiency and nothing else. Medical termination of pregnancy may be the choice, sometimes even before confirmation of the anomaly.
Professional attitude seems to be very important and some researches suggest that the choice to continue or terminate a desired pregnancy might depend upon which type of professional is consulted. There is a consensus in guidelines for practice about non-directiveness in counselling, but of course, this goal is more difficult to achieve in clinical practice (Ben Soussan et al., 2006, Chaplin et al., 2005, Marteau et al., 1994).
Between prenatal confirmation of diagnosis and birth, there is a long waiting period. The last part of the pregnancy is clouded by sadness, guilt and diffuse anxiety. Telling the rest of the family about the limb deficiency can be difficult when parents themselves have only vague representations of what it will look like. For parents, sadness, guilt and anxiety are powerful obstacles to normal elaboration of the ideal child during the third trimester of the pregnancy.
In addition to these considerations, parents are more focused on their painful thoughts than those who discover the limb deficiency at birth: the fetus' claims for attention are much more discreet than those of a newborn infant. The child's future functional and psychosocial adaptation is of course another subject of anxiety, and it won't be counterbalanced by the actual psychomotor and social development of this child until birth and emergence from the neonatal period.
At birth, we see a reactivation of the crisis. Our birth stories typically report an impression of going through the mourning process twice, phase one starting with prenatal diagnosis and phase two at birth. For parents who have been able to start the reorganization phase between prenatal diagnosis and birth, mourning resolution might come earlier.
However, when deep sadness and anxiety have characterised the second half of the pregnancy, there is a high risk of prolonged and more difficult mourning. In addition to feeling irrationally responsible for the limb deficiency, parents, especially the mother, might feel the burden of the choice to deliberately give birth to a child with an uncertain quality of life (Howard, 2006, Hunfeld et al., 1999, Sandelowski et al., 1996).
Sadness usually lingers through the neonatal period or longer, but eventually, parents start to rebuild their confidence. The rest of the steps to mourning resolution are similar to what parents who discovered the limb deficiency at birth go through: baby's normal development is reassuring, feeling of parental competence is restored, normal patterns of attachment, separation and individuation follow their course.
Parents of a limb deficient child go through a mourning process of their ideal child. Comparing the patterns of mourning of parents discovering the anomaly at birth and in utero, we found similarities and specificities to each situation. Our reflexion concludes with some suggestions for empathic and efficient counselling.
There is a need for constant readjustments in guidelines for professional practice, in an effort to keep up with rapidly evolving medical technology. These guidelines often stress the need for peer support when professionals are confronted with ethical issues and have to deal with difficult emotional crisis related to prenatal or neonatal diagnosis. It is recommended that consultation with specialists, like a physiatrist or an orthopaedist, should be scheduled soon. It's difficult to talk about the expected quality of life for a limb deficient child if you don't know much about it. Remember that professional approach and choice of words is a major factor in parental perception of the severity of the limb deficiency: realistic information is needed, but care must be taken not to reduce the fetus or baby to a missing body part.
After medical consultation, psychosocial support should always be offered, preferably by specialists too. Inexperienced social workers or psychologists are not always at ease to help expecting or new parents of a limb deficient child. As soon as possible, think about the whole family in your counselling, especially siblings.
Don't presume that parents who met with specialists and had time to prepare themselves before the birth of their limb deficient child have integrated all the information available: check and offer more. Even after resolution of critical phases of mourning, psychosocial help should remain available whenever pain is reactivated during normal developmental crisis.
Christiane de Tonnancour, M. Ps., Psychologist, Centre de Réadaptation Marie Enfant du CHU Sainte-Justine
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