Finding purpose

Ashlyn Stackhouse has never been afraid of a challenge, whether it was leaving home as a teenager to attend a rigorous residential high school, braving a single-track trail on her mountain bike or pursuing a career in a complex, ever-changing medical field. But when she was less than a day old, the challenges she faced were much more fundamental. The doctors told her parents that if she made it out of the NICU, she may never be able to walk, talk or eat on her own.

Twenty-five years later, Stackhouse is now healthy and fully independent. As she prepares to graduate from the genetic counseling master’s program in the Department of Human and Molecular Genetics, she is eager to provide the same compassion and support for her patients that she experienced as a child.

Defying the odds

Sixteen hours after being born seemingly healthy, Stackhouse suddenly went limp, her eyes glassy and her mouth “open like a baby bird,” unable to latch and nurse. She was immediately transferred from the community hospital in her small hometown of North Wilkesboro, North Carolina to Brenner’s Children’s Hospital in Winston-Salem, where doctors prepared her family for the worst.

“My parents were told, given my presentation, they didn’t think I would survive,” she said. “And here I am today. It’s a miracle and by God’s grace that I’m here.”

Stackhouse spent most of her childhood in and out of appointments with physical therapists, occupational therapists and speech pathologists, and the family traveled out of state for experimental treatments and clinical trials. Despite early predictions that she would likely rely on a wheelchair and a feeding tube for the rest of her life, she gradually gained muscle strength and independence from medical equipment.

While at her parents’ house in North Carolina at the start of the COVID-19 pandemic, rewatching home videos put her achievements in perspective.

"Each year you could see that I was walking straighter, with more muscle tone and control, with slow, constant progression,” Stackhouse said. “Watching those videos brings me to tears to see how far I’ve been able to come.”

Aside from an abdominal scar at the site of the gastronomy tube she used until age 5 and some lingering muscle weakness in her face, the physical manifestations of Stackhouse’s medical history have all but disappeared. She has undergone comprehensive genetic testing that helped rule out many conditions, but she has never received a formal diagnosis, and the mysterious illness remains a part of her. The lifelong pursuit of untangling her story, coupled with her deep faith as a Christian, led her to what is already becoming a rewarding career as a genetic counselor.

“Medicine is a space where I can go toward people who are in pain, who are scared, who are facing uncertainty, who are searching for answers,” she said, adding that she has experienced how isolating medical hardships can be. “When looking to how Christ willingly came and entered into horrific suffering on our behalf, I’m called to step into areas of pain and suffering. The secured hope I have in Christ compels me to be present and serve those in need of care and comfort. I saw the most beautiful place that coalesced with my experiences and commitments was in genetic counseling.”

A human touch

Always drawn to science, Stackhouse knew by high school that she would pursue a career related to medicine. She first explored pharmacogenomics, the study of how genes affect a person’s response to medication, which piqued her interest because one possible explanation for her health issues was an adverse reaction to the hepatitis B vaccine she received at birth. Then as an undergraduate student at UNC Chapel Hill, she shadowed a genetic counselor.

"I saw these people coming in during one of the most critical times of their life to find answers to these medical mysteries, and it allowed me to coalesce my love for medicine as well as my love for people,” she said. “I feel like I can empathize with them without even having to tell my story by being inquisitive, being able to be silent and being a good listener.”

After graduating from UNC with a bachelor’s degree in biology and minors in neuroscience and chemistry, Stackhouse completed a one-year theology and health care fellowship at Duke Divinity School. The program encourages participants to “imagine a world in which practices of health care display the love and wisdom of God,” and she said the opportunity to blend her two passions around likeminded people was a blessing.

Stackhouse then found her place at VCU School of Medicine, where she began the genetic counseling M.S. program in the fall of 2020. She completed the first year of the classroom portion of the program virtually from North Carolina and eagerly moved to Richmond last summer for the second year of classes and clinical patient interactions she’d been waiting for.

“I find that a lot of our patients feel like they’ve been dismissed by other health care providers, so I let them tell their story,” she said. “In my own medical journey, I have known the impact of that humanness, and that connection is deeply needed in health care.”

As a genetic counselor, Stackhouse knows that she will not always be able to provide a diagnosis for her patients.

“For some people, there is a genetic contributing factor that helps make sense of their symptoms and sometimes we cannot identify one,” Stackhouse said. “Having a genetic counselor who can carefully evaluate for potential genetic conditions to help someone better understand their lived experiences can be invaluable.”

Tahnee Causey, VCU’s lead genetic counselor and the M.S. program director, said she has been continually impressed by Stackhouse’s empathy, humility and dedication to her patients.

“Sometimes students can become bogged down in the genetics portion of genetic counseling, focusing more on the science than on the human,” Causey said. “Ashlyn never loses sight of the fact that she works with patients and families who rely on her to help them understand genetic testing, a new diagnosis or management options. She balances the need to provide accurate information with compassion and kindness.”

After carefully considering four separate job offers during her final weeks at VCU, Stackhouse accepted a position as a pediatric genetic counselor at the North Carolina Children’s Hospital in Chapel Hill. For her and her family, returning to her home state to serve patients with stories like hers is a dream come true.

“We’re all so excited. This is what we feel like the Lord has led me to do, and it aligns with the path I’ve had to walk,” she said. “I am committed to providing the best care for my patients and their families and look forward to supporting them along a part of their own journeys.”