Denise Feeney of Olney, Md., notes that one of her closest friends, like her, is a mother of a biliary atresia patient. But meeting her was hardly coincidental – with a purpose in mind they were introduced to each other by Liver Center Coordinator Mary Kay Alford. 

“If you’re a new parent coming in dealing with the prospects of a liver transplant, it helps tremendously to be able to talk with someone who has gone through that experience. It gives you hope,” Feeney says. 

Connecting parents and patients is just one of many facets of the job, says Alford, a pediatric nurse practitioner with 25 years of experience. She meets with patients and their families in clinic, makes medication changes, orders lab tests and follows up with the results, checks with the parents at home on their child’s disease status, and updates the patient’s pediatrician and other specialists. Then there’s the internal coordination with the liver clinic staff and the transplant team. But overall she sees herself as more of a facilitator than a coordinator. 

“I like the word ‘facilitating,’” Alford says. “My job is to help the parents take care of their child with a complex, chronic disease.” 

That means a lot of confidence building through communication and patient education, Alford adds. Whether patients are newly diagnosed, facing a liver transplant or managing a chronic but stable condition, they and their parents all have concerns, many of which need an empathetic ear and immediate attention. 

“I do a lot of hand holding, a lot of reassuring, a lot of just listening to their concerns,” Alford says. 

Noting that she doesn’t want to be “just a voice” on the other end of the phone, Alford tries to make sure all patients and their parents see her before they leave the clinic. She also tries to make herself accessible 24/7: “It’s easy to call in a prescription or check on lab results from home rather than have the parents wait for days.” 

Alford has also helped develop a new mid-level provider model for children with viral hepatitis. With more treatment options for these chronically ill but generally stable patients, along with patient-family education, she notes, they can be well managed at home. 

“I teach the parents how to do the injections, have lab work done, call them with results, and adjust their meds,” Alford explains. “This gives parents hope that they can manage this condition, and they don’t need to see the hepatologist every clinic visit.” 

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