LEXINGTON, Ky. (Jan. 14, 2019) – When Brandon and Jill Embry of Lexington found out they were expecting their second child in January of 2017, they were thrilled. Already parents to nine-month-old Silas, they loved the idea of their children being so close in age.
As with many pregnancies, there were a few bumps, but the baby's development was on track and genetic testing came back normal. Brandon and Jill decorated the nursery in anticipation of the arrival of a baby girl, whom they would call Claire. But at 20 weeks, during what was supposed to be a routine ultrasound, a significant birth defect in their baby girl was revealed.
Countless more tests and appointments at Kentucky Children's Hospital and Cincinnati Children's Hospital revealed a heartbreaking truth. Claire was diagnosed with CHARGE Syndrome, a complex series of life threatening birth defects that affects a number of systems in the body.
This was devastating news for the Embrys, and they faced a difficult decision. Would Claire's new life be a series of surgeries and hospital stays to abate her condition and sustain her life, or would they let her live as long as she could, peacefully with her parents and brother?
After prayer, deliberation and conferring with Dr. Lindsey Ragsdale and the palliative care team at KCH, the Embrys chose the latter. Claire lived just nine hours, and passed away in her mother's arms.
"Sometimes, after they're born, you don't have all the information you need to make decisions," said Brandon. "If we had intervened with Claire, we might have regretted that. We wouldn't have been able to hold her or spend time with her, she would have suffered, and it would have been all for naught."
The Embrys laud Dr. Ragsdale for her advice and support during the most difficult time in their lives.
"She didn't tell us what direction to take, but based on her advice, we feel like we made the right decision. In a situation like that, the decision can be so overwhelming, you need someone looking in that you trust."
Brandon and Jill wanted to find a way to support Dr. Ragsdale and her team while honoring Claire's memory. Brandon had the idea of doing a memorial bike ride, and maybe raise a little money that would support Dr. Ragsdale's work at KCH. Brandon had originally envisioned a ride with some friends, but with the support of the Bluegrass Cycling Club, a non-profit organization was formed and an official event, Ride for Claire, was set.
"After Claire had passed and we had time to process it, we realized that her team played a big role in making that as good as it could possibly be," said Brandon. "So we wanted to do something to repay them and thank them. Initially it was a fundraising effort for people to give to a memorial fund, or give to KCH. I wanted to ride to honor my daughter."
On Sept. 8, 2018, the day after what would have been Claire's first birthday, 110 riders came together on for a ride through Lexington's scenic backroads. Brandon and Jill were stunned by the response. They raised $15,000 for the palliative care team at KCH.
"We wanted to raise money for Lindsey so that she could have the resources she needs to help other families," said Brandon. "She's great at what she does. She was able to see into our situation and give insight."
The money raised by the Embrys will go toward the purchase of genetic testing equipment for KCH to help families diagnose birth defects and determine the risk of reoccurrence of birth defects in future pregnancies.
With the success of the inaugural Ride for Claire, the Embrys are planning the next ride to celebrate what would have been Claire's second birthday. But first, they have another event to celebrate: the birth of their third child, Samuel, on Jan. 3, 2019.
To find out more about the Claire Foundation and the Ride for Claire, click here.
UK is the University for Kentucky. At UK, we are educating more students, treating more patients with complex illnesses and conducting more research and service than at any time in our 150-year history. To read more about the UK story and how you can support continued investment in your university and the Commonwealth, go to: uky.edu/uk4ky. #uk4ky #seeblue