Georgia Toddler Born With Genetic Disorder Celebrates Major Milestone: Her First Birthday
AVONDALE ESTATES, Ga. - Brayleigh Richard is a survivor, who has come a long way in the last six months.
"She was on oxygen and she's since been off for 5-6 months now, "says her mother Sabrina Bowens-Richard, "She was born with a small hole in her heart, and that's closed on its own, miraculously."
We first introduced viewers to Brayleigh and her big sister Courtlyn back in April of 2015. Sabrina told us how, when she was six months pregnant, doctors diagnosed Brayleigh with a genetic disorder known as Trisomy 18, or Edwards Syndrome.
"They basically told us that Trisomy 18 meant she would be 'incompatible with life.' That was the term that was used," Bowens-Richard remembers.
Brayleigh was born October 8, 2014, five weeks premature, at Emory University Midtown Hospital in Atlanta.
"For the first few seconds, everything looked great," says her father, Chris Richard. "Then, she went into respiratory distress, and shortly thereafter, she went on a respirator."
The first few days and weeks were difficult, with Brayleigh in the neonatal intensive care unit, fighting to survive. Her prognosis was grim.
Sabrina remembers, "We were initially told, 'Give her 24 hours.' She went past that. Then we were told, 'Give her a week.'"
But Brayleigh made it, and kept going. For the first year, she was in and out of the hospital and the operating room.
"And each time she's hospitalized, you just think to yourself, 'Is this that time we've always been preparing for? Is this the time she just might not pull through?" says her mother.
Because the Richards know less than 10% of children with Edwards syndrome survive to see their first birthday. Sabrina says it was "devastating" when Brayleigh began home hospice care, which usually marks the final months of a person's life.
But, again, Brayleigh defied the odds, eventually "graduating" from hospice.
"After six months, she kept getting stronger, she kept growing, she kept thriving," says her mother.
"And at some point, hospice was, like, 'There's no need. She's doing so well. There is just no need for it.'"
So the Richards push on, loving Brayleigh, reaching out to other Trisomy 18 families to get support and give support.
Sabrina Bowens-Richard says, "It's been amazing since the FOX story aired the last time, we've gotten an overwhelming response our family just from that story. And it's been a range of people who've had children with it, and they've lost their precious little ones, to people who have older children, who are maybe 10 years old. And they're saying, 'Just hang in there. Things can get better.'"
Last month, a huge milestone the Richards weren't sure Brayleigh would reach: her first birthday. They celebrated with a big party, inviting family, Brayleigh's medical team, even her former hospice nurses.
"So, I think our mindset has changed," says her mother. "I remember seeing a quote that said, 'Life is not just to endure, but it's to live.' And she's not just enduring life, she's living it, and we're living it with her," Bowens-Richard says.
The couple is grateful for this day -- and every day -- with Brayleigh.
Brayleigh's mother Sabrina is blogging about her journey. To see more photos and read more about her first year of life, visit teambrayleigh.blogspot.com.