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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 preliminary data from an ongoing study.
Researchers Briana Nelson Goff, PhD, a professor in the School of Family Studies and Human Services at Kansas State University, and Nicole Springer, PhD, director of the Family Therapy Clinic at Texas Tech University, are both mothers of a child with Down syndrome. Their study is titled "My Kid Has More Chromosomes Than Yours! The Journey to Resilience and Hope in Parenting a Child with Down Syndrome."
"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," Dr. Goff said. "It can be a very positive experience."
The researchers collected data through an online survey for parents of children with Down syndrome. Working with student teams, they are analyzing more than 500 responses that have been received since the survey went live last fall.
They found that the parents' experiences in first learning their child had Down syndrome had similarities, regardless of whether the diagnosis was before or after the birth. "The majority said it was very devastating," Dr. Goff said. "They went through periods of depression, grief, mourning and shock and felt scared, angry, disappointed or helpless."
Once those initial feelings subsided, however, parents reported positive experiences and joy raising a child with special needs. "Several parents said the time to bond with their child was one of the most important keys to their resilience. They had to take that time to realize what they were facing, which then helped their adjustment," she said.
The researchers did not poll parents directly about their experiences with medical professionals, but this issue emerged as a theme. Approximately 20 percent voluntarily reported negative experiences, compared to 8 percent who said their experiences were positive. Specifically for parents who completed prenatal screening, the negative experiences often involved medical professionals discussing abortion as the only option or parents feeling pressured into making a decision to abort.
"This was the biggest surprise to come from the results," Dr. 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."
She added, "Honestly, though, I can't imagine what it's like for a medical professional. Having a baby is such a joyous occasion, so for an obstetrician to deliver what is potentially some of the worst news a parent could ever experience is certainly a difficult situation to face. But that's part of what this study is for-to get professionals information so they know how to respond in ways that are most helpful to the parents and children."
The parents reporting positive interactions were presented with other options, such as adoption or raising the child. Some were referred to local families raising a child with Down syndrome.
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