Families who are hard of hearing and deaf face unique challenges during pregnancy, labor, and delivery even in the best of circumstances. Much of what has been reported about the deaf experience during pregnancy comes from sources in Britain. The U.K.’s Disability Discrimination Act of 1995 seems to have spurred families, advocates, and providers to begin to address the needs of deaf mothers. The vignettes below are excerpts adapted from Sabina Iqbal’s book Pregnancy and Birth: A Guide for the Deaf Woman (2004). They describe the isolation, and lack of resources and information encountered by deaf women in the healthcare setting.
“It was difficult to access information about pregnancy or parenting from any bookshop or library because of the high level of English and I had to rely on my husband or someone to translate the information from English into British Sign Language (BSL).”
“I missed out on a lot of information in antenatal classes. I saw a video about preparing for labor and delivery but it had no subtitles and no BSL on the video. I would have preferred to go to antenatal classes for deaf parents so that I was in a signing environment. Instead I was the only deaf parent in the class. I was so isolated and felt left out from the friendly conversations among the class.”
“I put in big capitals on my birth plan that I was hard of hearing and how they could help me. I think that helped a bit, but when the crunch came, nobody told me what was going on. I was cut when I didn’t want to be and I did feel ignored. When the baby was born, they told my husband it was a baby girl and I was lying on the bed exhausted and forever asking whether I had a baby girl or boy.”
“The midwife came for a check of me and the baby. I made sure that my own hearing mother wasn’t around because then the midwife would only talk to my mother and not me.”
“During the first night after my baby was born, the vibrating baby alarm wouldn’t work as the ward had many crying babies and the alarm kept going off. So I told the nurse to alert me if my baby cried when I was asleep—but she didn’t. Instead she woke me and angrily asked me why I was not taking care of my baby who was crying. I had to remind her that I was deaf.”
These experiences point out the importance of awareness and of clear communications with mothers and families during pregnancy and childbirth. These clear communica- tions become immeasurably more important when faced with a perinatal loss or infant death. The fear and stress of the situation can be compounded because of communica- tion difficulties. Poor communication between hearing providers and families who are deaf or hard of hearing may create an atmosphere of mistrust in the system, depression, further isolation, and guilt. Families may never get to ask all the questions about the infant’s death that they want to, and the questions they do ask may be misunderstood. This lack of knowledge affects future relationships between the husband and wife, between parents and surviving children, and between parents and the entire family.
After validating the best method for communication with the family, the FIMR inter- viewer can use that method to make a difference for these families that will last a life- time. The FIMR interviewer can provide accurate information about what happened to the infant. As appropriate, the interviewer can reassure the parents they could not have done anything to prevent the death and that everything possible was done to save their infant. The FIMR interviewer can listen to the story of the mother’s loss. Finally,
64 VOICES FROM THE COMMUNITY: CROSS CULTURAL EXPRESSIONS OF GRIEF AT THE LOSS OF AN INFANT
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