When you have a family of eight children, with both parents working and running a business, it pays to be a planner. But when two of those kids have serious heart conditions, it’s also important to be flexible, since you never know when you may end up in the hospital.
Courtney Lott and her husband Emory recently did that juggling act when their daughter Emmy, 9, was at Children’s Healthcare of Atlanta at Egleston for 21 days in March. Emmy has a small hole in her heart called a patent foramen ovale (PFO) in addition to her sickle cell anemia. Daughter Aniya, 11, has Down Syndrome, several holes in her heart and had surgery for her AV canal as an infant.
With medically fragile children, you learn to be less rigid and to take one day at a time,” Courtney said. “We plan less and enjoy our kids more. We try not to stress about the future.”
Although it can be devastating to learn that your child has a heart problem, Courtney says the doctors at Sibley have been amazing. She appreciates their patience and kindness and the ways they go the extra mile for the kids – and their parents.
“I’ve never left an appointment at Sibley without a diagram or drawing of what is happening,” Courtney said. “As a visual learner, those representations are very helpful to me in understanding exactly what’s going on with my children’s hearts.”
Emmy is very nervous around doctors and does not warm up to them easily. However, when Dr. Parks, who is now retired, met her, he was determined to get a smile out of her before she left his office.
“At the first appointment, he spent 20 minutes with her designing a Barbie wedding on her iPad,” Courtney said. “He was not going to let her leave without a smile, and he won! She was giggling and giddy by the end of the appointment. He’s got our hearts forever. Everyone at Sibley does.”
The Sibley staff also takes special care with Aniya, making sure she understands, to the best of her abilities, what they are going to do before they begin an exam.
Courtney says that her advice to other parents beginning a journey with a medically fragile child is to “lean in” and allow the child’s providers to come alongside them.
“Be ready to be the best advocate for your child but allow a team approach,” Courtney said. “Sometimes you are defensive and protective, and you want to make everyone else the enemy, but your child’s providers are your allies. Let them to do what they do best.”
As an adoption consultant, Courtney’s experience with her daughters’ heart conditions has helped her to educate other prospective parents. When a couple is adopting, they state what factors they will be open to accepting. Courtney’s agency, Faithful Adoption Consultants, gets a lot of children with heart conditions and because of her own experiences, she can speak to what it’s like to parent a medically fragile child.
Medicine has come so far, and heart conditions don’t have to define our children,” Courtney said. “It’s just one part of their story. I can share my experience, and I can help more people say ‘yes,’ which is awesome.”
As for her other six children, Courtney wants to be sure they don’t get lost in the shuffle. It encourages her to be intentional in her parenting.
“Having medically fragile siblings has taught my kids compassion and empathy that they wouldn’t have learned any other way,” Courtney said. “I’m so grateful for that.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.