By Maureen Gilmer, IU Health senior writer, email@example.com
Maureen “Reney” Barnard used to wonder why her daughter seemed so tired all the time.
She appeared otherwise healthy, so Barnard couldn’t help but get a little frustrated watching Eva Barnard’s friends give her piggy-back rides on school field trips. Or seeing her daughter spend so much time sleeping.
“I didn’t know that she was really kind of a badass,” Barnard said.
That’s because Eva, now 18 and a senior at Brebeuf Jesuit Preparatory School, was diagnosed with sickle cell disease just last year at the age of 17. For years, she had been dealing with unusual fatigue and pain episodes that she figured were normal.
Typically, newborns in the United States are screened for the blood disorder, which primarily affects the Black community but can affect people of any race.
In Eva’s case, however, she was adopted as a baby from an orphanage in Kenya, where testing was never done. And in the years since, she has been healthy enough to try different sports, playing basketball and softball in middle school, participating in gymnastics, and playing tennis for her high school team.
“She was reasonably healthy until last November, when she had a pulmonary embolism that sent her into a medical tailspin,” Eva’s mom said.
Eva was transferred to Riley Hospital for Children for treatment. Her dad, Tom, remembers that scary time.
“Thankfully, we were here, but the folks in hematology didn’t know she had sickle cell because we didn’t know. Her lungs got worse and pretty soon she was in the ICU,” he said. “Her oxygen numbers kept falling, her lung collapsed.”
Soon, Eva was on a ventilator. But after five days on the vent, she recovered and was discharged a couple of weeks later.
It was during her time at Riley that testing revealed sickle cell, a genetic disease that affects red blood cells, often causing severe episodes of pain. The disorder can lead to stroke and other complications.
For Eva, the diagnosis was an answer to questions she didn’t know she had.
“I WONDERED WHY I WAS SO TIRED”
“Honestly, not to be self-absorbed, but I knew I was good at these sports I was playing,” the teen said during a visit last week to Riley’s Comprehensive Sickle Cell Disease Clinic. “I knew I could do better, but I was so out of breath for some reason. “
She recalled times when her family would travel to Lake Michigan and climb the Dunes.
“Old people would get up to the top before me,” she said ruefully. “I felt like I was healthy, but I wondered why I was so tired.”
When she heard the diagnosis of sickle cell, “Everything made sense,” she said. “Like why I was always so cold and out of breath and had random pains in my legs. I thought everyone had it, so I thought it was normal. My whole life I dealt with it.”
Her parents, who are white, couldn’t help but kick themselves for not knowing.
“We were completely unprepared for that diagnosis, but it explained so much of her childhood,” Tom Barnard said. “We spent a lot of time looking back and realizing that’s why she couldn’t run a mile and why the track coach was mad at her and all those things we didn’t know.”
Still, he said, his daughter has handled it all remarkably well, even winning the mental attitude award on her tennis team for showing up to play even when she didn’t feel well.
“She’s just a tough kid.”
“BEAUTIFUL AND BRIGHT”
His wife agrees.
“It’s unbelievable now how strong we think she is. It’s turned everything around because she manages her pain without narcotics. She’s just amazing. She works out every day, goes to school. She is beautiful and bright.”
Dr. Meghan Drayton Jackson, medical director of the hematology program at Riley, couldn’t agree more.
“Eva is a special young lady who over the years had to figure out what she could and could not do without understanding why. Her story underscores the importance of raising awareness about sickle cell disease."
Dr. Drayton Jackson and Dr. Andrew O'Brien recently received grant funding to support an initiative to educate med/peds trainees about sickle cell disease.
“The collaboration between specialist and PCP is so important to the overall health and well-being of individuals with sickle cell disease and all those with chronic illnesses,” she said.
TEAM OF SPECIALISTS
During Eva’s clinic visit at Riley, she met with multiple specialists, including physician assistant Megan Matthes, transition coordinator Kewanna Gordon, child psychologist Dr. Julia LaMotte, and educator Donna Romack.
All are part of Eva’s care team, though Romack has known the teen longest. She actually was the principal of Orchard School in Indianapolis when Eva was a student there. Romack is not part of Riley’s school program but does work closely with those teachers and consults with patients’ home schools as well.
She moved into a newly created role at Riley seven years ago that focuses on advocating for patients – many with cancer, blood diseases, and neurofibromatosis type 1 – after they finish treatment.
“I talk to kids, listen to moms and dads, and educate the educators,” she said. “Anything to help a child succeed. We put the child at the center, asking what do we need to do as educators and her team to support and give her everything we can to help her gain her own sense of agency and be able to advocate for herself.”
LEARNING TO SPEAK UP
Eva’s parents also encourage their daughter to not only advocate for herself but advocate for more awareness of sickle cell disease, which is why she agreed to share her story.
Today, as she considers a career in cosmetology and/or working with animals, she remains focused on her health. She pushes herself by working out six times a week, yet acknowledges that she still needs to take naps sometimes after school.
“I can’t wait to go to the gym because it’s like a release,” she said. “It feels so good.”
And despite being in and out of the hospital several times over the past year, she appreciates the care she has received.
“I love Riley. They are great,” she said.
Her dad seconds that.
“The folks here at Riley have been just outstanding,” he said. “We feel like they obviously understand her condition and have a lot of resources. It really gives us comfort and reassurance that she’s in the right place and thank gosh we’re here.”
Photos by Mike Dickbernd, IU Health visual journalist, firstname.lastname@example.org