One Doctor’s Call, One Family’s Hope: How a Cross-Country Connection Saved Graylyn’s Life
Graylyn’s journey to Cincinnati Children’s started long before his family ever boarded a plane.
It began when his hepatologist in Utah, recognizing the complexity of the case, reached out to his colleague Alexander Miethke, MD, medical director of the Liver Transplant Center at Cincinnati Children’s, and set in motion a connection that would ultimately save Graylyn’s life.
The family did some online research and decided to pursue care at Cincinnati Children’s.
Graylyn’s mom recalls: “Every mom’s review I’d read said, ‘Cincinnati Children’s saved my kid’s life.’ That’s when we knew this was where we needed to be.”
At just 17 days old, Graylyn underwent successful surgery, led by Dr. Miethke.
This early milestone, however, was just the beginning. Despite growing well after the procedure, Graylyn’s oxygen levels remained dangerously low, leaving Dr. Miethke and his care team searching for answers.
After receiving so many answers throughout Graylyn’s early diagnoses, his parents hoped this next phase of care might finally reveal what was still being missed.
The cascade of diagnoses had included: newborn screening revealing low oxygen saturations and a congenital heart defect, followed by findings of heterotaxy syndrome and severe jaundice. And then further testing that uncovered high bilirubin levels and ultimately led to a diagnosis of biliary atresia, a life-threatening liver disease.
But once Graylyn was in Cincinnati, Dr. Miethke and the multidisciplinary care team identified the missing piece: hepatopulmonary syndrome—a rare lung complication of chronic liver disease.
That discovery—yet another diagnosis for Graylyn—pushed Dr. Miethke and team to pursue a liver transplant, not only to treat the underlying liver disease but also to address the dangerous lung complications it was causing Graylyn.
Today, the energetic 3-year-old is thriving post-transplant—running, climbing, exploring—and now requires oxygen only while he sleeps. It’s a remarkable shift from when he used to require oxygen support 24/7.
Describing Graylyn’s care team as more than experts, his mom says they’ve become an extension of the family during the most difficult chapter of their lives.
“We don’t have family here [in Cincinnati], but it felt really welcoming. His care team has been like family to us.”
