NRL News

All that my wonderful 19 year old daughter with Down syndrome has become

by | Oct 10, 2018

By Eileen Haupt

Editor’s note. October is Down Syndrome Awareness Month.

Recently, after posting on Facebook, a photo of my beautiful 19-year-old daughter with Down syndrome kayaking, I got to thinking about the young lady Sadie has become–all that she likes to do, and how it would have been impossible to have known all this when we learned of her diagnosis, just after birth.

Many mothers receive the diagnoses during pregnancy through prenatal testing and much of the literature about Down syndrome is not very helpful or positive. A quick internet search on pregnancy sites will give you descriptions of Down syndrome that would give any mother anxiety over the future of her child. Consider this description from, “What to Expect:”

Children with Down syndrome usually share certain physical features — eyes that slant upward, a flattened nose, a short neck, small ears, a large tongue, small hands and feet, and little muscle tone or loose ligaments. Kids also tend to face a range of developmental delays as well as a variety of health conditions. Half of babies with Down syndrome are born with heart defects, more than 60 percent have vision problems, and 75 percent have some hearing loss. About 12 percent are born with twisted or misshapen intestines, approximately one percent of babies with Down syndrome have hypothyroidism, and some babies develop leukemia later on. Because of abnormalities in their immune system, children with Down syndrome also tend to be more susceptible to infections.

Although the above description isn’t necessarily inaccurate, it paints a very bleak, and, I think, very distorted, picture of a child with Down syndrome. As Down syndrome advocate and swimmer Karen Gaffney would say: They forgot the part about swimming the English Channel!

It is no wonder that the abortion rate for babies prenatally diagnosed with Down syndrome is so high, about 70% in the United States, and even higher in European countries where some nations brag about “eradicating” Down syndrome.

Descriptions like this one are simply a list of symptoms; the person with Down syndrome is so much more than that.

I recognize very little of my daughter in that description, though she does possess some of those characteristics. Sadie was born with a heart defect, but she was successfully treated with open heart surgery at 3 months’ old and has not had any problems since. She is very healthy and is hardly ever sick.

Her tongue did stick out a bit when she was little, as is common, but with a little tap on her tongue from us, with a “tongue in” reminders, the muscles in her mouth were eventually strengthened and able to keep her tongue in.

It’s true that she is shorter than she would have been, had she not been conceived with the extra chromosome, but so what? She is a tad bit far-sighted (though not as much as her mother) and wears glasses, but again, so what? Plenty of children are shorter than their peers or wear glasses.

I could have never have known that Sadie would become an American History buff. She can recite the presidents from George Washington up through Rutherford B. Hayes (can you?!). She can tell you many of the signers of the Declaration of Independence. She loves Daniel Boone.

She loves to write. She has copied (hand written) both the entire Declaration of Independence, and the entire U.S. Constitution, including Amendments.

For fun!

For every U.S. holiday and major Catholic feast day, she pens a thoughtful reflection about that day, and draws a colorful picture to go with it. Who could have predicted these interests and abilities?

I used to say that we are able do certain activities as a family, like biking (she shares a tandem with my husband), but not others. For instance, we would probably never hike a mountain together. But guess what? It turns out that she enjoys hiking, so we probably will hike that mountain!

Sadie paddles her own kayak, traversing all over the lake with us. On our last outing, she and I paddled over to where we saw a pair of loons, and we sat there quietly, watching the loons play and splash around in the water. It was a special moment, and one that MaterniT21 or Verify (manufacturers of new, “non-invasive prenatal tests”) would not have caught in their lab.

As with all children, it is impossible to predict their personalities, their unique interests, their likes and dislikes, their gifts. We are fooling ourselves if we think we can. Their lives will be so much more than the bleak pictures painted by pregnancy literature and medical professionals.

Sharing these positive stories undoubtedly gives pregnant mothers hope. But is it enough?

Many fear that the recent introduction of accurate, non-invasive prenatal testing will further increase the abortion rate. I count myself among them. However, we must put the blame where it belongs. These new invasive tests in and of themselves, are harmless. The real culprit is abortion.

Until the day when abortion is no longer legal, the lives of unborn babies with Down syndrome will be at risk. We must keep telling our positive stories, of course, but more importantly, we must keep working to make abortion illegal and unthinkable.

Eileen Haupt is the alternate delegate from Vermont to the NRLC Board of Directors and a board member of Vermont Right to Life Committee. She is a co-founder of Keep Infants with Down Syndrome (KIDS).

Categories: Down Syndrome