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“The reality of having a baby with Down syndrome is nothing like your fear, and your sadness will be transformed into joy”

by | Oct 7, 2021

By Eileen Haupt

Editor’s note. October is Down syndrome awareness month.

 In the 1980s, the newly formed National Down Syndrome Society worked to have October recognized as National Down Syndrome Awareness Month.  This designation continues to this day and (in normal years), marked by some 250 communities across the U.S. holding local Buddy Walks, in support of individuals who possess that extra 21st chromosome that cause the genetic condition known as Trisomy 21, or more commonly known as, Down syndrome.  

The awareness campaign is necessary because, sadly, we as a culture still hold on to archaic stereotypes of those living with Down syndrome.  As recent as 50 years ago, it was common practice for parents to be told to put their newborns with Down syndrome into institutions and forget they were ever born.  Just as that practice was coming to an end, along came the development of amniocentesis and the legalization of abortion, and now it is common practice for pregnant mothers to abort their babies with Down syndrome and try to forget they ever existed.

Though we have made much progress as a society—thanks to the efforts of organizations, such as NDSS and Special Olympics—there is still a general prejudice we possess as a society.  When I was pregnant with my daughter Sadie, (not yet knowing she had Down syndrome), a co-worker, also pregnant, explained why she would not have kept her baby if he had Down syndrome. “I mean, we’re only going to have one child, so why bother?”  

Though her words sound insensitive, I might add that she was the first person to bring our family a dinner right after Sadie was born.  And I cannot claim that my attitude toward Down syndrome was any better.  Many years ago, I remember having a conversation with my mom about a family we knew who had a daughter with Down syndrome.  

In most cases, Down syndrome is not hereditary, but hers was the rare exception where it was; it ran in the family.  With shame, I remember saying to my mom, “Then why do they bother having children?”  Ouch!  See, I was at one time equally as insensitive as my co-worker.  

Studies show that almost 75 percent of babies prenatally diagnosed with Down syndrome are aborted.  Research conducted by Dr. Brian Skotko of Mass General Hospital estimates that because of these elective terminations, the overall number of babies being born with Down syndrome has been reduced by about 33 percent.

Apparently, there are many mothers who are also thinking, “Why bother?”

Why bother?  Where do I start!  It is impossible to know what it is like to raise a child with Down syndrome without experiencing it. It is perfectly normal to feel sadness and fear when given a diagnosis of Down syndrome for an unborn child.  But most parents, if they choose life for their child, quickly fall in love with their baby with the extra 21st chromosome!  

Consider these testimonials from a few moms:  

Justice Amy Coney Barrett says of her youngest son, Benjamin, “He is the unanimous favorite of the family.”  

Actress Sally Phillips describes how she experienced learning of her son Ollie’s diagnosis:  “The way it tends to go is, that it is a tremendous shock, and you do feel devastated for a bit but everybody not only adjusts but quite often their lives are more meaningful and happier for having the person with Down’s syndrome in it.”

Several members of a Facebook prolife Down syndrome group offered these testimonies:  Celeste says of her son, “Without him, I wouldn’t have become this person – a much better person. He is the best part of me.”  

Susan remarks, “The diagnosis was paralyzing; the child is absolutely amazing.” And Sherry, sums it up nicely: “Nothing prepares you for how those kiddos pry open the heart.” 

Former Vice-Presidential candidate Sarah Palin told radio host Dr. James Dobson in an interview that she couldn’t even open a book on Down syndrome given to her by her doctor when she first learned of her unborn son Trig’s diagnosis. But all that fear went away as soon as he was born. She says, “God opened my eyes to perfection, which Trig is to us.”  She adds that, “He is the best thing that has ever happened to me.”

This is what expectant parents need to understand.  When the diagnosis is given prenatally, there is no baby to see, no baby to hold. But as soon as that baby is born, the healing begins.  

All parents go through this transformation in one way or another.  I always like to say to an expectant mom, “The reality of having a baby with Down syndrome is nothing like your fear, and your sadness will be transformed into joy.”  

My daughter Sadie has been a great blessing to me and to our family and friends.  The challenges are few, and the blessings are many.  She has been just like any baby, child, and now, young adult.  She has her own interests, a great sense of humor, and an uncanny memory for anything having to do with American History or actors in the movies she sees, and she is a delightful young lady.  

But it not just myself and our family who are blessed. We as a nation are blessed by the presence of individuals with the extra chromosome.

Categories: Down Syndrome