“I just couldn’t imagine my life without him; he is the best part of me,” Antwanetta Alford-Steward says of her son with Down syndrome.
October is Down Syndrome Awareness Month, and an estimated 250,000 people in the United States are living with the condition.
Each year, about 6,000 babies with Down syndrome are born in this country. Over the last 50 years, people with the chromosomal disorder have gone from living about 10 years on average to 47 years.
While many families experience the rich joy that comes from sharing life with a person who has Down syndrome, parents who first receive the diagnosis may feel uncertain and fearful.
The most commonly used genetic testing during pregnancy reveals risk factors a baby has for genetic abnormalities, but it can not give an actual diagnosis, explained John Seago of Texas Right to Life (TRTL). Trisomy 21 is the genetic abnormality associated with Down syndrome.
Current Texas law prohibits abortions after 20 weeks; however, it contains an exception for children with disabilities.
This exception is used to discriminate against babies with disabilities, Seago described, and TRTL is working on legislation to change that.
“This is an important issue that the state of Texas has an interest in–protecting preborn children with expected disabilities,” Seago explained to The Texan.
The Preborn Non-Discrimination Act (PreNDA) has been introduced several times in the last few legislative sessions, and TRTL plans to work toward its passage again this year.
Human Coalition Action, a national pro-life political advocacy group, also supports PreNDA, pointing out that several other states have passed similar laws.
“We don’t tolerate discriminatory practices in this country,” Chelsey Youman of Human Coalition Action told The Texan. “This is the last frontier and Texas should lead.”
She said that while a majority of Americans polled, both pro-life and pro-choice, agree that babies with Down syndrome should not be aborted, a study has shown that abortions occur in 67 percent of these cases.
Not only would PreNDA protect preborn children from discriminatory abortion, but it would require that families be given information about resources such as social and medical services that affirm the life of their preborn child, Seago pointed out.
Hope Story is one such resource in North Texas. The support group began as a way to bring hope to young families who receive a Down syndrome diagnosis for their preborn children.
Parents from Hope Story offer encouragement and mentor relationships to help new parents on their journeys.
“Your days are going to have more joy and laughter and hilarity than you ever dreamed possible,” said one mom in a Hope Story video.
“Your child will teach you about unconditional love,” submitted another.
Daniel and Kelly Crawford of Abel Speaks, a group supporting parents who receive a life-limiting diagnosis for their preborn children and expect a loss at or soon after birth, are working to help families too.
They speak from experience. Their son Abel was born with Trisomy 18, a more severe genetic abnormality than Trisomy 21, and lived for 15 days.
Since then, they have served over 100 similarly situated families through providing mentors, maternity and birth photography, medical provider resources, and a plan for a celebration of life along with keepsake items.
In their experience, it can be difficult to find a supportive medical provider, but the Crawfords are working to change that.
“It is not the norm for a provider to encourage patients to continue their pregnancy. But once we share our story and the joy along with the sorrow, it has changed providers’ perspectives.”
“Most providers think they are helping and protecting parents. Statistics and studies show that parents who choose to terminate experience greater levels of despair and depression. It is a very different experience for those parents who see it through. They are never more sad because they got to see and hold their child,” the Crawfords offered sympathetically.
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Kim Roberts is a reporter for the Texan in the DFW metroplex area where she has lived for over twenty years. She has a Juris Doctor from Baylor University Law School and a Bachelor's in government from Angelo State University. In her free time, Kim home schools her daughter and coaches high school extemporaneous speaking and apologetics. She has been happily married to her husband for 23 years, has three wonderful children, and two dogs.