Guest Blog: Recognizing World Down Syndrome Day

In honor of World Down Syndrome Day, I have invited my friend Cindy Bryl to be a guest blogger. Please leave her some love in the comments!

-Megan Evans

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By Cindy Bryl

Heard of Deborah and Ariel Levy?

They are the latest “winners” in a “wrongful birth” suit filed in Oregon. They were recently awarded $2.9 million because they claim that Legacy Health botched a CVS test that would have told them whether or not their baby had Down Syndrome. So, the Levy’s filed a “wrongful birth” suit against Legacy Health, claiming they would have aborted the baby if they had found out their now four–year-old daughter had Down Syndrome.

The Levy's and their attorney convinced a jury in the United States of America in the year 2012 that the hardship and potential cost of raising a child with special needs was so great that they needed $14 million to provide for her future (ultimately they were only granted $2.9 million).

They claim to love their daughter, their third child. SO much that they stood up in a court of law and stated for all to hear: "We would have aborted our daughter if we had known ahead of time that she had Down Syndrome.

Go ahead and read that again. I'll wait.

The Levy's and their daughter’s therapists believe that she will NEVER understand what that statement means. The Levy's, the therapists, and medical professionals who testified during this trial stated that the child in question will never be able to live on her own or be a contributing member of society.

The Levy's daughter will understand more than they can ever imagine. Their daughter lives in a society where people with Down Syndrome are living on their own, going to college, acting, getting married, working, advocating for themselves, and are potentially even able to drive.

I can't tell you if the Levy's love their daughter or if they will use that money for her future. What I can tell you is that one day that mother is going to come out of her “cocoon” and realize the beautiful butterfly that hatched from her womb.

The Levy's and people like them are not going to go away. They will grow in number. The recent development of the Materni21 test lets pregnant women know as early as eight weeks if they are carrying a child with Trisomy 21. It's a simple blood test. And according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children's Hospital Boston, "…an estimated 92 percent of all women who receive a prenatal diagnosis of Down Syndrome choose to terminate their pregnancies.”

Some members of the special needs community liken this phenomenon and the development of more and more tests to a new form of Eugenics. While the scientific developments are cutting edge, the information and advice being given by the medical community to parents who receive these diagnoses is anything but.

If I can share my own experience with AAMC in the year 2010, we were treated as if we were crazy. We did not have a prenatal diagnosis, and upon birth were treated as if our daughter were perfect. Our questions about her eyes, the extra 4 inches of skin on the back of her neck, and the fact that she did not cry were brushed aside. The pediatrician who examined our daughter with in the first 12 hours of birth told my husband "you're crazy — your daughter is healthy and perfect". At the 24-hour mark a nurse practitioner told me she would order the test but only because she was a mother and knew my anxiousness not because she thought anything was wrong. But oh wait, it's Saturday we can't do testing on Saturday.

Fortunately for all of these doctors and nurses I was on morphine and other pain killers post C-section. Despite the ridiculousness of the hospital staff and the doctors from our pediatric office, we were at peace. We had a beautiful, healthy baby girl whose Mama was already in love with her and knew she had Down Syndrome.

We eventually got great care from our primary doctor and were sent to Children's Hospital for testing and to speak with a geneticist who was extremely positive and educational. Our baby had no major health problems and we were able to settle into life as a family of five.

So, what's the point? My point is that I don't care about the Levy's or the American 'Justice' system or the ridiculous doctors and nurses who ignored us; I care about my baby girl and all the other children with special needs who need a voice and an opportunity. Yes, even the Levy's daughter. Especially the Levy's daughter.

People tend to ignore and avoid the things they find undesirable or unfamiliar. People are uncomfortable around different, disabled, or destitute. Our society does not foster a philosophy of more alike than different. Our society is one of survival of the fittest, the cream rises to the top, the end justifies the means—all of which leads to our own feelings of inadequacy and an extreme desire to be like everyone else.

We need to open our eyes, brains, and hearts to the ABILITIES of ALL people; "Special Needs" or not. My answer to this is Bridgie's Brigade. Bridgie's Brigade is about not looking the other way.

Bridgie's Brigade will embody the idea that while we are all more alike than different, it's okay to be different and we should celebrate our differences as we are all gifted in different ways. Bridgie's Brigade will support three charities: Best Buddies, The Special Olympics of Maryland, and Reece's Rainbow.

You see it's not about our Bridgie really or even just our family, it is about ALL of us working together toward a better future for ALL of our children. Reaching beyond what is 'socially acceptable', breaking down our own walls, and most certainly coming out of our comfort zones.

We hope that you will join Bridgie's Brigade for what it is now realizing the potential of what it can and will be.

Motivated or moved by this post?

1. Like Bridgie's Brigade on Facebook

2. Donate to my individual crusade for the best buddies challenge

3. Join Bridgie's Brigade for the Best Buddies Challenge or make a donation to the team

4. Pray for Bridgie's Brigade to be successful in turning hearts and minds.

5. Click here to learn more about our family.

6. Know someone who just had a baby born with Down Syndrome or has received a pre-natal diagnosis who would like someone to talk to? Contact me directly at ckbry@verizon.net