At age 6, Emily was suddenly fighting for her life.
What began as a family vacation on Cape Cod turned into a medical crisis when Emily became seriously ill. Doctors first suspected leukemia, but after several tests, that diagnosis was ruled out.
That relief was short-lived. Further testing revealed something just as serious: Emily had cirrhosis of the liver. The cause of her liver disease was unknown, and the path forward was overwhelming. Emily would need a liver transplant to survive.
Emily remembers always feeling tired and unable to keep up with her friends. Frequent hospital visits and late arrivals at school became her new normal. At home, she played doctor with her stuffed animals, diagnosing and mimicking the treatments she was receiving.
It was only later that she understood that was her coping mechanism—a way to process her reality through play. Fortunately, Emily recalls being very emotionally supported by the unwavering love of her family and community.
A team approach to pediatric transplant care
At Mass General for Children, pediatric liver transplant care is family-centered and multidisciplinary. Emily’s pediatric care team included a hepatologist, transplant surgeon, nutritionist, social worker, and nurse coordinator. Together, they guided Emily and her family through every step, from evaluation to surgery preparation to life after transplant.
This collaborative approach ensured Emily received expert pediatric care tailored to both her medical needs and her experience as a child navigating a serious illness.
Holding onto hope
The wait for a donor liver was filled with uncertainty and anxiety. For four years, Emily’s parents did everything they could to keep life as normal as possible while managing her illness.
“It’s an artful dance,” said Mark. “It’s a long journey. My advice to others experiencing a similar situation is to try to remember to take care of yourself as well.”
Emily found comfort in her nurses. They not only cared for her but played games, talked with her, and helped with schoolwork, making hospital visits less scary. The compassionate care Emily received even inspired her older sister, Monika, to become a nurse.
Finally, on April 7, 2003, Emily’s parents received the long-awaited call: a donor liver was available. They wondered if Emily was ready for this surgery and if it was the right decision.
With little time to decide, they turned to faith for a sign. They called a first-ever emergency family meeting, and asked Emily, “Would like to get a transplant tomorrow?”
Her answer was simple and confident: “Yes, I’m ready. I’m not afraid.” That was their sign.
The transplant team moved quickly. The surgery was successful. Emily began her recovery surrounded by the people who had supported her throughout her journey.
