A new study shows parents of kids with disabilities who may have received suggestions to have an abortion of their baby before birth are battling back against that abortion culture thanks in part to social networking web sites.
A new study published this week in the highly accredited pediatric medicine journal, Pediatrics, reveals social networks are trumping the medical establishment. The study is entitled The Experience of Families with Children with Trisomy 13 and 18 in Social Networks.
Brad Mattes, the director of Life Issues Institute, talked more about parents of such children and the difficulty they face from doctors and others who encourage abortions:
“Incompatible with life.” That was the devastating diagnosis Rhonda and Russell Dennis received the day their daughter, Lilliana was born. Tests confirmed she had Trisomy 18, a chromosomal anomaly with a high fatality rate. 90% of babies born with T18 don’t live past the first year. Although the medical community provided no hope, 14-month-old Lilliana is alive and thriving today thanks to her parents’ relentless pursuit to save her life.
The bias of the medical community against Trisomy 18 is striking. Armed with grim statistics, the consensus has been to not intervene and not provide life sustaining treatment. “We were sent home with nothing. Doctors told us we should just ‘let her go,’” Rhonda said. Like the Dennis family, most parents are left feeling helpless, hopeless and alone. However, relying on their own resources, T13 and T18 parents have rallied around one another to provide the vital information, support and encouragement that they were not getting anywhere else.
Now, these parents’ voices are being recognized as the true experts.
Rhonda and Russell Dennis credit an online support group for educating them about the heart surgery that saved their daughter’s life. Their guidance also helped the family through the daunting process of finding a doctor willing to perform the surgery. Rhonda and Russell even had to plead their daughter’s case before the hospital ethics committee, asking them this poignant question, “What if it were your daughter?” Rhonda adamantly believes that had it not been for the other T18 parents, Lilliana would not be here today. “If parents don’t know what to push for and what to demand, a lot of times they won’t get it,” she cautions. “Thankfully, we found hope. We met these families and saw their kids doing stuff, interacting, walking and talking.”
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Lilliana’s story will be featured on the TV program, Facing Life Head-On airing the week of July 29. www.facinglife.tv.