A Mother’s Story: African Americans and Down Syndrome: “This was not a death sentence. My child has potential.” (Part 1)
There are many misconceptions about Down Syndrome, especially in the African American community. Some people believe that black children don’t get Down Syndrome. Although, recent studies show that African Americans have the lowest reported prevalence of Down Syndrome, it certainly occurs in our community. Also, unfortunately, the average life expectancy for an African American in the U.S. with Down syndrome is just 35 years old–the lowest of all ethnic groups.
I admit, that outside of having the screening test I was pregnant myself, I knew very little about Down syndrome and also believed that it is only more common among older women. However, recently a very good friend of mine, Aria, learned that she was carrying a child with down syndrome and successfully delivered her beautiful son, Chao, in December. When she shared her personal struggles and the many misconceptions and myths about black families and children with down syndrome, I asked her to share her thoughts with the Mocha Manual community. Not only did she share her story, but her wonderful mother wrote a beautiful journal of her experiences that will be posted here too.
It is my earnest hope that we, as black mothers and fathers, can increase awareness of down syndrome in our community and empower more black families to share their story, lift any stigma and find support. Here in Part 1, I talk to Aria about her personal journey. Part 2 will feature excerpts from the beautifully written journal by Aria’s mother.
Kimberly: What was it like for you when you learned your child had Down syndrome?
Aria: Honestly when my OB/GYN called me and advised my Panoramic blood work came back High risk for Down Syndrome- Trisomy 21, I was in shock but decided to think positive and proceed with further testing until we were certain. Once confirmed, I was resolved to look at the glass half full instead of half empty and thus began all my research on the subject. This was NOT a death sentence! My child had potential in my eyes NOT a disability!! I became a bit obsessed I dare to say. I began taking extra care of my diet and incorporated the vitamins and herbs I researched that would assist in alleviating some impairments Down Syndrome babies were prone to!
For Your Information: Panorama screens for certain chromosome conditions in the baby. Humans have 23 pairs of chromosomes for a total of 46 — two copies of each set. The first 22 pairs are numbered 1 through 22. The last pair determines sex. Girls have two X chromosomes, and boys have one X and one Y chromosome. Health and development problems occur when there are extra or missing chromosomes. Trisomy 21: This is caused by an extra copy of chromosome 21 and is also called Down syndrome. This is the most common cause of intellectual disability. It may also cause certain birth defects of the heart or other organs and may cause hearing or vision problems. A trisomy occurs when there is an extra copy of any one chromosome — 3 copies instead of 2.
2. Kimberly: What would you recommend to other moms? Any tips such as finding a support group or were there any web sites or organizations that were helpful?
Aria: My first advice is to LIMIT your time on the Internet. Sometimes too much research can be detrimental and too scary with all the information out there and you become more paranoid then informed. You should become involved with support groups as soon as possible and become familiar with the Early Intervention programs offered by your State. The support systems are key and maintaining your sanity and being proactive in dealing with your child’s health and mental development!
3. Kimberly: Why do you think sharing your story is particularly important for black mothers?
Aria: When I began doing my research it was hard to find support groups or find someone to relate to that was of the same nationality as me. I even came across web sites where people questioned if African Americans suffer from Down Syndrome?? It appears we are less likely to share our experiences when it comes to this important issue. I want others to have the information more readily available for themselves if they would like a face to relate to that looks more like their own when dealing what can be a sensitive topic for some.
Resources for Support:
https://www.facebook.com/ShiningOnDown - African America support group on Facebook
Another African American Down Syndrome Blog: http://smith-smiths.blogspot.com/