At 3 years old, Vivie loves to play at the park, sing and dance, and watch her favorite TV show “Daniel the Tiger.” But these were things that she almost didn’t get to enjoy. She was born with Down syndrome and a heart defect that required open heart surgery when she was 4 months old.
For those of you unfamiliar with Down syndrome, in those without Down syndrome, the nucleus of each cell contains 23 pairs of chromosomes. Down syndrome is caused by an individual having a full or partial extra copy of chromosome 21, according to the National Down Syndrome Society’s website.
Down syndrome is the most common chromosomal condition — about one in every 700 babies born in the U.S. have Down syndrome and about 6,000 babies are born with Down syndrome in the U.S. each year, according to the NDSS.
Sunday, March 21, is World Down Syndrome Day. To raise awareness, Vivie’s parents wanted to share their daughter’s story.
“It’s been a journey, but she’s really changed our life, [and] our outlook on life,” says Vivie’s mother Mandye Robinson.
Several months before Vivie was born in 2017, Mandye and her husband had a genetic test done when she was about 10 weeks pregnant. It was supposed to be an exciting experience — they did the testing to find out their child’s gender.
But the genetic test revealed something much more daunting. Doctors called the Robinsons and told them that they were not only having a little girl, but she would have Down syndrome and a heart defect.
“You have a range of feelings about it because… this is not what you thought your life would look like,” Robinson said. “And then you start to wonder, you know, if my child’s going to be healthy, is she going to be okay, is this going to impact our family, or how is it going to impact our family?”
Once Vivie was born, she and the Robinsons stayed in the neonatal intensive care unit for a couple weeks. It then became clear that doctors had to do something to save her life.
Four months later, Vivie had to have open heart surgery to correct a ventricular septal defect, which is a hole in the lower heart wall. Before surgery, Robinson read her “I Carry Your Heart with Me” by E.E. Cummings, a poem she had been reciting since she had her first daughter 8 years previously.
Robinson said while doctors at Children’s Health did their best to put their minds at ease, it was still a “pretty intense experience.”
But despite it all, Vivie is thriving. Almost three years post-surgery, she is doing great and currently living in Prosper with her parents. She constantly amazes her mom and dad with her progress and the joy she finds in life.
While they were initially afraid of the unknown that her diagnosis brought, they recognize Vivie as one of the greatest gifts of their life. Her family couldn’t be happier.
“As we went through that process, I mean, ultimately, just what a joy she is to our family and to everyone that she comes in contact with,” Robinson said.