Thoughts of parents of a first child with a chromosomal abnormality when considering prenatal testing during pregnancy with a second child

Abstract

Purpose: To clarify the thoughts of parents of a first child with a chromosomal abnormality when considering prenatal testing during pregnancy of a second child

Method: We conducted interviews with 11 parents of a first child with a chromosomal abnormality who subsequently had their second child. The results were analyzed with qualitative descriptive analysis.

Results: Nine categories were extracted after analyzing the parents’ thoughts on prenatal testing. Parents of a first child with a chromosomal abnormality who subsequently had a second child felt that “their values had changed since before the birth of their first child.” During the pregnancy with the second child, the couple had “anxiety about the second child having disabilities and a desire to find out information about the fetus,”and “discussing, as a couple, the prospect of life if the second child also had a disability” while feeling “conflicted about prenatal testing.” The parents were also deciding whether or not to have prenatal testing while feeling that “their decision-making was influenced by the involvement of doctors.” The parents expressed that all life is important and that their first child is “The worries and joys of raising a child are no different from those of raising a normal child”. “their child is adorable with or without a disability,” but they also felt “the realistic burden of raising a child with a disability” and “struggled with a sense of inferiority for having a child with a disability” due to society’s negative view of disabilities.

Discussion: Parents having a second child when the first child had a chromosomal abnormality felt anxious about the second child possibly also having disabilities and wanted to obtain information about the fetus. However, they also expressed feeling conflicted about using prenatal testing to determine whether the child would live, and having the test themselves. It was thought that the parents felt truly conflicted because they realized that their child was adorable even with a disability. They also struggled with a sense of inferiority for having a child with a disability due to negative views of disabilities in society, which was further affected by the availability of prenatal testing.

　It is essential to understand the position of parents of children with disabilities and to support their decision-making about prenatal testing, including their family members while remaining fully cognizant of their anxiety.