Receiving the Diagnosis of Down Syndrome

Meet the Barrow family

By Tiffany Barrow - Photos by: Heather Gregg – 21 Vines Photography

Ephesians 3:20 “Now to him who is able to do exceedingly and abundantly above all that we ask or think, according to the power that works in us.”

Hi, I’m Tiffany Barrow, former resident of Fishers, IN, and this is my family. My family is originally from Baton Rouge, LA, and after receiving a promotion at work, we relocated to Indiana three months after giving birth to our twins, which included a 21-day NICU stay for Lola. We received a post-birth diagnosis of Down syndrome for our Lola who is the oldest of our set of twins. Lola was born with all of her hearing and vision intact and all of her organs completely whole. She was admitted to the NICU for failure to maintain body temperature and elevated bilirubin. Her pediatrician observed soft physical markers of Down syndrome and ordered chromosomal studies. I’m grateful for the post-birth diagnosis because I was able to avoid the stress, worry, and fear of the unknown associated with the Down syndrome diagnosis coupled with a relocation to a new state for a new role at work.

Our family consists of my husband of 15 years, an 11-year-old son, Elijah, a 9-year-old daughter, Brinkley, and 2 1/2-year-old girl/boy twins, Lola and Levi. Our relocation to Indiana allowed our family to bond like never before. We became a team with the sole focus of getting settled, adjusting to our new normal, and finding our tribe within the Down syndrome community. Our first task included finding a new church home. Little did we know that our newfound church home would be a place of connection for everything else we needed and were praying for.

We joined Heartland Church. It was a church where I noticed a young, black man that appeared to have Down syndrome. Some may question why his race mattered. It mattered. Upon receiving the diagnosis of Down syndrome, I panicked out of ignorance. I knew NO ONE with Down syndrome. I knew that it existed, but I had no touchpoint to call and to ask questions. The only images I found online and ever saw on TV were of white people. Growing up in the South, racism was and still is a reality. Upon receiving Lola’s Down syndrome diagnosis, I panicked. Not because of Down syndrome, not because she was female, but because she was a black female with Down syndrome. Our society continues to struggle with the acceptance of differences of race. HOW MUCH MORE DIFFICULT would raising Lola be with her Down syndrome diagnosis?

I asked the young man if he was alone or at church with his parents. He introduced me to his mother who is still today a very close friend of mine. It was through this relationship that we met our in-house nanny for the twins six months into our relocation. The very thing that I was afraid to share publicly (Down syndrome) was the bridge connecting us to our answered prayers and the beacon of light guiding us through this journey. I also connected with the “Lucky Few-Indiana” group on social media where I found a village of women so well versed and knowledgeable within this space and navigating therapy, healthcare system, etc. ... This group helped heal my heart. I was welcomed and supported by a white woman in Indiana who didn’t care that I was black. We were and are family connected through our experiences and journeys with Down syndrome.

Lola continues to THRIVE! She enjoys singing, dancing, and posing for the camera. She continues to receive physical, occupational, and speech therapy. Since relocating back to Louisiana, our family is working towards replicating many of the initiatives and support groups that we found in Indiana. We continue to share Lola and Levi with the world to show that they are more alike than they are different and that Down syndrome is nothing to fear but to embrace and to celebrate.

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