GLOBAL’s Response to Social Media Influencers Who Spread Inaccurate Information About Down Syndrome

Read Michelle Sie Whitten’s Op-Ed in STAT, the Leading National Health-Medicine-Scientific Discovery Publication

  Read the Full Op-Ed Here   Prenatal & Newborn DS Info  

 

My Adult Daughter Has Down Syndrome. Her Life is Entirely Different From What Experts Expected

Parents Facing Prenatal Down Syndrome Diagnoses Deserve Accurate Facts, Not Fearmongering

EXCERPTS From the Op-Ed Written By Michelle Sie Whitten, GLOBAL Co-Founder, President & CEO and Proud Mom to Sophia Kay Whitten

The genetic counselor handed me a tissue.

“Don’t worry, Mrs. Whitten,” she said. “Eighty to ninety percent of people terminate these pregnancies. You can, too.”

Twenty-three years ago, my husband, Tom, and I had just received prenatal screening results indicating our unborn child probably had Down syndrome. Instead of offering us actual counseling, she played a video about Down syndrome — and it was terrifying.

Sophia’s Birth & Operation 

I am fiercely pro-woman. Women are fully capable of making difficult decisions, but meaningful choice requires trusted, vetted information. Otherwise, it stops being counseling and becomes coercion.

Then, about 30 weeks into my pregnancy, we learned that our daughter, Sophia, had a congenital heart defect…

What we learned was reassuring. Roughly one-third of congenital heart defects in children with Down syndrome resolve naturally, and many need only a minor intervention. About half need open-heart surgery during infancy. The survival rate for the various open-heart surgeries in all children was and remains between 95% and 99% — the same as with children without Down syndrome.

The diagnosis was frightening, but the facts were not.

Like All New Parents We Built Our Community

Wanting to do everything possible to support my daughter, I asked our pediatric cardiologist which specialist he would recommend. He stared at me in disbelief and said, “Mrs. Whitten, the only thing that is going to influence your daughter’s IQ is the fact that she is mentally retarded.”

We fired him. But I’ll never forget his exact words and his insulting assumptions: that Sophia’s future already had been written, that her life could be reduced to a diagnosis, that low expectations were somehow scientific, and that somehow what is good for a person without Down syndrome is not appropriate for a person with Down syndrome.

Sophia “Firsts”

The progress we’ve made in research and medicine has seen an increase in 10 years of lifespan.

Too often, however, the information given to expectant parents has not kept pace. Families are still receiving outdated information and, in some cases, being counseled as though there is only one reasonable path forward.

That reality is one of the reasons that the Global Down Syndrome Foundation created the Prenatal and Newborn Pamphlet. We had a simple conviction: Parents should never leave their doctor’s office and have to rely on a Google or now an AI search to get accurate information about their child.

Sophia Growing Up

No doctor, genetic counselor, or test could show me her future — they could only tell me that Sophia had an extra chromosome.

Sophia’s Story is Still Being Written…

Read the Full Op-Ed Here  

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