July 6, 2022

Positives can outweigh negatives for new parents of Down syndrome children

US researchers find that doctors can be hostile

The tumultuous feelings parents have when
they first learn their child will be born with Down syndrome give way to joy
and resilience, according to researchers at Kansas State University and Texas
Tech University. Briana Nelson Goff and Nicole Springer, both mothers of a
child with Down syndrome, have based their findings on an online survey of
parents.

“The goal of our study is to help
parents and professionals understand that having a child with Down syndrome
isn’t the end of the world; it can be a very positive experience,” says Dr
Goff .

Initially, most parents feel deeply
shocked. “The majority said it was very devastating, and went through
periods of depression, grief, mourning and shock, and felt scared, angry,
disappointed or helpless,” Goff said. But when those feelings subsided,
parents reported that raising a child with special needs was a joyful
experience.

Around 20% of the parents reported negative
experiences with their doctors, compared to 8% who said their experiences were
positive. Medical professionals often mentioned abortion as the only option or
parents felt pressured into making a decision to abort. “This was the
biggest surprise to come from the results,” Goff said. “I would
expect this answer from parents who had their child 20 years ago, but not from
parents who had their child within the past five years. Eventually the
researchers will publish a book with statistical information and personal
stories from parents. ~ Kansas State
Uni press release, Aug 3



Michael Cook
Down syndrome