title: Ro52 autoantibody-positive women's experience of being pregnant and giving birth to a child with congenital heart block.
abstract: OBJECTIVE
  congenital heart block may develop in the fetus of women with Ro/SSA autoantibodies. The aim of this study was to investigate how women expecting a child with congenital heart block (CHB) experienced their pregnancy and post-partum period.
  
  
  METHODS
  women giving birth to a child with CHB in Sweden during 2000-2009 were identified in a population-based manner and individually interviewed post-pregnancy using a semi-structured interview guide. The interviews (n=21) were audiotaped, transcribed verbatim and analysed by qualitative content analysis.
  
  
  RESULTS
  three categories emerged from the responses: learning, suspense and facing. Learning contained both learning about the child's heart block, but frequently also about autoantibody-positivity and a potential rheumatic diagnosis in the mother (16/21). The medical procedures and information differed considerably depending on the area of residence and who was encountered in the health-care system. In many cases, ignorance about this rare condition caused a delay in treatment and surveillance. Suspense described the women's struggle to cope with the feeling of guilt and that the child had a serious heart condition and might not survive the pregnancy. Facing included the post-partum period, leaving the hospital and adjusting to everyday life. The women had tended to put their pregnancies 'on hold', and some described that they needed prolonged time to bond with their newborn child.
  
  
  CONCLUSIONS
  increased awareness and knowledge of CHB are needed to provide adequate care. Offering psychological support by a health-care professional to facilitate early bonding with the child should be considered.
  
  
  CONCLUSIONS
  there is a need for structured programs for surveillance of the pregnancies. Such programme should implement guidelines for the involved personnel in the chain of care and make relevant information accessible for the women and families.
authors.affiliation: Department of Medicine, Karolinska Institutet, S-171 76 Stockholm, Sweden.
authors.forename: Joanna
authors.initials: J
authors.lastname: Tingström
authors.forename: Elisabet Welin
authors.initials: EW
authors.lastname: Henriksson
authors.forename: Sven-Erik
authors.initials: SE
authors.lastname: Sonesson
authors.forename: Marie
authors.initials: M
authors.lastname: Wahren-Herlenius
mesh_terms: D000223:Adaptation, Psychological; D001323:Autoantibodies / Q000276:immunology*; D001327:Autoimmune Diseases / Q000276:immunology / Q000523:psychology; D005260:Female; D006167:Guilt; D006301:Health Services Needs and Demand; D006327:Heart Block / Q000151:congenital* / Q000276:immunology / Q000523:psychology; D006801:Humans; D007231:Infant, Newborn; D049590:Postpartum Period / Q000523:psychology; D011247:Pregnancy; D011248:Pregnancy Complications / Q000276:immunology / Q000523:psychology; D018566:Pregnancy, High-Risk / Q000523:psychology; D037841:Pregnant People / Q000523:psychology*; D012261:Ribonucleoproteins / Q000276:immunology*; D011795:Surveys and Questionnaires; D013548:Sweden; D000099207:SS-A Antigen
chemical_list: D001323:Autoantibodies; D012261:Ribonucleoproteins; D000099207:SS-A Antigen