Academic journal article Journal of Prenatal & Perinatal Psychology & Health

Fathers Reflect on Their Experiences of the Receipt of a Postnatal Diagnosis of Down Syndrome or Trisomy 21

Academic journal article Journal of Prenatal & Perinatal Psychology & Health

Fathers Reflect on Their Experiences of the Receipt of a Postnatal Diagnosis of Down Syndrome or Trisomy 21

Article excerpt

Abstract: This exploratory study investigated the experiences of fathers upon the postnatal news that their newborn babies had been given diagnoses of Down syndrome. Thirteen fathers were interviewed about their experiences of immediate postnatal support. Participants had biological children born with Down syndrome and interacted with the western medical community regarding the child's birth. Fathers often experienced the messengers of the news of a postnatal diagnosis of Down syndrome as insensitive and pessimistic. They felt strongly that hospitals should be more prepared, and that medical personnel should have better training for delivering a postnatal diagnosis of Down syndrome.

Keywords: Down Syndrome, Fathers, Postnatal Support

In the United States, approximately 400,000 families have a child with Down syndrome (DS), and about 6,000 babies (one in every 733) with Down syndrome are born each year (National Down Syndrome Society, n.d.). Of these, about 85% are diagnosed with DS postnatally (Skotko, 2005b).The manner in which medical professionals inform parents of the news that their newborn baby has been given a diagnosis of Down syndrome has a profound effect (either positive or negative) on the parent(s). The attitudinal beliefs of the messenger, most often the doctor, have a large effect on how that person delivers the news. Often parents readily recall every detail of how the news was delivered: where they were, what exact words were shared, the affect of the doctor, their own initial reactions, and whether or not resources were shared. Skotko (2005a; 2005b) researched the experience of mothers upon the receipt of the news that their newborn babies has been given diagnoses of Down syndrome. Skotko (personal communication, 6 July, 2007) suggested that similar research is needed on the experiences of fathers. This exploratory study adds to the literature by examining the experiences of 13 fathers upon the receipt of the news that their newborn baby had been postnatally given a diagnosis of Down syndrome.

Background

What is DS?

Down syndrome occurs at conception, and is diagnosed before the child's birth about 15 percent of the time (Skotko, 2005b). Down syndrome results from the genetic formulation of three, rather than two, copies of the 21st chromosome. All people with Down syndrome experience some degree of cognitive delay. People with Down syndrome are also prone to certain medical problems such as congenital heart defects as well as hearing and respiratory problems (National Down Syndrome Society, n.d., U 1). Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct, or prevent many of the problems associated with Down syndrome in the future (National Down Syndrome Society, n.d., U 1-12).

Parents' Experiences and Perspectives

Written accounts by fathers in the last 15 years on their experiences about how they felt upon the receipt of the news that their child was born with Down syndrome are few. Berube (1996) wrote about the 1991 birth of his son, Jamie. His reflections of his son's birth resonate with the experiences of many parents whose children were born within the last 15 years. Berube wrote,

James appeared within minutes, an unmoving baby of a deep, rich, purple hue, his neck wreathed in his umbilical cord. "He looks downsy around the eyes," I heard. Downsy? He looks stillborn, I thought. They unwrapped the cord, cut it, and gave him oxygen. Quickly, incredibly, he revived. No cry, but who cared? They gave him an Apgar score of 7, on a scale from 1 to 10. I remember feeling an immense relief. My wife was alive, my second child was alive, at the end of a teeth-grating hour during which I wondered if either of them would see the end of the day. Down syndrome seemed like a reprieve. Over the next half hour, as the nurses worked on James, and Janet and I tried to collect our thoughts, I realized I didn't know very much about Down's, other than that it meant James had an extra chromosome and would be mentally retarded. …

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