Madrid 1997 World Down Syndrome Conference When a Child is Born with Down Syndrome Workshops
INFORMING THE PARENTS
Baccichetti, C.
Clinica Paediatrica Dell' Universita di Padova. Via Giustiniani 3. 35128 Padua (Italy). Phone: 39-49-8213.559. Fax: 39-49-8213.510
The emotional reactions of a family to the news that their child is not 'normal' are influenced by how they are informed about their child's condition.Communicating the news to parents whose children have developmental or psychical disabilities can be very difficult for the informer and devastating for the parents. Because the parent's experience during the initial informing process can play a major role in the family's perception of the child, the physician informing the parents must pay careful attention to how the information is given. It is painful beyond belief to be told that precious new baby has Down syndrome. Instead of that special sense of joy, all those months of waiting end with your world turned upside down. Numerous investigators from different disciplines have studied parents' emotional responses to the diagnosis of specific types of childhood conditions (Down syndrome, congenital heart disease, diabetes) and chronic illness in general.It was noted that in parents, child rejection was correlated with severe emotional instability soon after the birth, present depression and aggressiveness towards physicians, teachers, etc. Parents tend to project rejection of their children onto the former (physicians) the latter (children), who appear in their eyes underestimate that their child has the objective capacity correlated with the desire for another pregnancy probably to create a better self image after the trauma of giving birth to a child with Down syndrome.Furthermore, trust in rehabilitation is greater when parents are told early, with accuracy and delicacy. Literature findings suggest that clinicians can have an influence on family reactions to the news by planning the situation in which the family is informed, assessing pre-existing factors that commonly influence the parents reactions and selecting the information that meets the needs of that particular family. It is well known that family reaction to news is correlated not only with the nature of the condition, but also with pre-existing family factors, the setting in which family is informed and type of informing strategies. A number of reports and research studies have recommended guidelines for this practice. Important aspects of these recommendations are:
1. breaking the news as early as possible
2. with both parents together
3. with the child present
4. giving early opportunity for follow-up interviews
5. providing sufficient information in clear non-technical terms
6. handling the interview in a sympathetic and honest manner
PROPOSALS TO NEW PARENTS: THE ADAPTATION OF HAVING A CHILD WITH DOWN SYNDROME
Martin, J.F. APETMM-Regroupment pour la Trisomie 21. 22, rue Donck. Laval (Québeck). H7N 4E6(Canada). Phone: 514-663.8611. Fax: 514-878.2127. E-mail: martin.jean-francois@uqam.ca
Becoming a parent is not an easy task. It is something new for which we do not have experience. If the child also has Down syndrome, things become a little more complicated.We enter a new world where we are asked to become an educator, a speech therapist, an occupational therapist, etc. We have to go through many emotions that other parents will never feel. We have to learn a new vocabulary and have contacts with many professionals who on many occasions will tell us what to do without asking us what we want. We also learn how to stimulate our child and how important this stimulation is for his or her development. Realizing this there are many 'miracle therapies' which are supposed to 'cure' our child. All of this new information leaves us (parents) quite vulnerable. We feel guilty because we gave birth to a child with Down syndrome, we feel guilty if we do not invest all of our time on the development of our child, and we feel guilty if we do not try any new therapy. Enough! This workshop will help you to clarify your role as a parent and to place all the pieces of the puzzle together. We will take the time to look at our self, in order to adapt to this new life situation.
MOTHERS AND YOUNG CHILDREN WITH DOWN SYNDROME: COPING AND ADAPTATION.
Down syndrome can be thought of as a stressor that has multiple dimensions of impact on the family. Successful family adaptation to Down syndrome entails meeting the unique health and developmental challenges of the child with D.S. while at the same time maintaining the well-being and sense of coherence of the other family members. In this study we examined the process of mother's adaptation to a child with Down syndrome. We interviewed thirty-six mothers of young children who had Down syndrome, living in the state of Wisconsin. Mothers in our study met the challenges of the birth of a child with Down syndrome (DS) by modifying expectations of the child, adjusting their behaviors and making use of family and community support. Our data show that after initial negative feelings mothers develop strategies to foster contentment with their children. These mothers are capable of sustaining breast feeding and modifying their lives, with the help of family and community, to optimize their effectiveness as parents. Religious beliefs are often helpful in this process. Our interview data are supported by cross-sectional and longitudinal work by Warrant, Roach and Leavitt which show that mothers adapt behaviour to be 'appropriate' to the child. Our data are consistent with our previous work which shows that appropriate 'reading' of infant is important for optimizing infant development. The implications of our study are that parents of children with DS can modify their behaviour and expectations to enhance their well-being with the help of family and community support.
DOWN SYNDROME AND THE NEONATOLOGIST
Memo,L., Saia, O.S. Divisione Di Patologia Neonatale. Ospedale Regionale María Dei Battuti. Ca'foncello. 31100 Treviso (Italy) Phone: 39-422-32.26.66/-32.26.08. Fax: 39-422-32.27.40.
Down syndrome (DS) is the most frequent genetic cause of mental retardation; the incidence of D.S in Italy is 1:758 liveborn infants.The pediatrician, and specially the neonatologist, play an important part in the assistance to the Down child, from the medical, as well as social and human, points of view, since the pediatrician is often the person parents can refer to while facing the many problems involved in such an experience of life. Diagnosis. A karyotype showing trisomy 21 and the clinical phenotype are needed for the diagnosis. The delineation of the phenotype in the newborn child can be made by following Hall's criteria, made up of ten clinical signs: flat facile profile, poor Moro reflex, dysplasia of pelvis, anomalous auricles, dysplasia with D.S., and six or more in 89% of them. Announcing the diagnosisThe moment of communication is a very important step in the course of acceptance of the child with D.S. by parents. In our Department the diagnosis is communicated to the parents by only two neonatologists trained to do so, early, in a proper and qualified way, supported by a karyotype. The communication must be unhurried and undertaken in a quiet environment: the neonatologist needs to spend sufficient time with the couple to establish mutual rapport so that personal feeling can be freely discussed and questions asked and dealt with sensibility.Scheduled workupThe type of workup will depend on the period of the life of the person with D:S: Three main conditions may be encountered in the neonatal period: congenital heart defects, reported in about 40% of patients; gastrointestinal malformations, shown by about 12% of subjects and congenital cataract, observed in 4% of cases. Our clinical protocol regarding the D.S. child involves an accurate pediatric examination on birth and daily during hospitalization in our Department, possible pediatric surgical examination and abdominal echography (Rx in case of suspected gastrointestinal malformation), EGG and Echocardiography and possible cardiologic evaluation and ophtalmologic evaluation. Besides we consult the physiotherapist to advise on early physiotherapy and we propose the mother visits an infantile neuropsychiatrist during the 1st month of life to evaluate the mother-baby relationship. At discharge: we advise the parents to include the newborn in our clinical-instrumental follow-up plan; we insist on the convenience of breast-feeding.Parental associationsEventually we think that it is the neonatologist's task to inform parents about the existence of D.S. child parental associations, which can represent a prior instrument to face the problems related to the birth of a D.S. child and the obstacles met in the attempt to achieve his social insertion.
SURVEY ON THE NEEDS OF NEW-BORN BABIES WITH DS AND THEIR FAMILIES IN HONG KONG
Chow, C.B., Yu, C.M., Chiu, G., Tam, A.
Hong Kong Down Syndrome Association. G/F Wing A. Chung Tung House. Tung Tau State. Kowloon. Hong Kong (Japan) Fax: 852-271-80811 E-mail: chowcb@netvigator.com
The Hong Kong Down Syndrome Association, in fulfilling its mission to improve the quality of life of persons with Down Syndrome and their families, has conducted a survey on the needs of infants with Down Syndrome who are under two years of age, and their families. According to a local study (Lo, Lam, & Chan), the minimal incidence of Down syndrome in Hong Kong was estimated to be 1:767. With an average number of 69,000 newborns each year, an estimate of about 90 children with Down Syndrome are born each year. How do families deal with the birth of an infant with Down syndrome? Do they get the support they need? What services are available and how can they be improved further? These questions are crucial in helping us understand what is needed in the Down population. The present study examines the experience of families in bringing up their children with Down syndrome. It aims at identifying the gaps of existing services in meeting the needs of persons with Down syndrome and their families. Data were collected by means of a questionnaire administered to 35 families that have a newborn child with Down syndrome below the age of two, and were willing to participate in the survey. Of the 35 families, 10 were randomly selected for a semi-structured interview for qualitative data. The survey has tried to identify various service gaps in meeting the needs of the family in relation to the birth of a newborn child with Down Syndrome by investigating into the experience of parents, especially mothers, on receiving the news of their child having Down Syndrome, their initial reactions and later experience in trying to come to terms with it, and in working with related professionals in dealing with the demands associated with the birth event during the first two years. The survey also explored the impact of the birth of the child on marital relationship, mental health of the mother and possible familial benefits and opportunities, which also may suggest other needs of the family.