ANDOVER, Mass. — In a quiet suburb in Massachusetts, a baby named Hope is living up to her name.
Hope was an underdeveloped, emaciated baby living with end-stage liver failure in a Chinese orphanage. Her condition, biliary atresia, is a life-threatening illness in infants whose bile ducts in the liver don't have normal openings, causing bile to become trapped and build up in the liver.
Considered to be dying, Hope's condition also made her seemingly unadoptable.
But Cindy Morrison – a single mom who has adopted four other daughters from China – didn't give up on baby Hope. Morrison and her family pushed to adopt her and bring her home to Massachusetts under the notion the child could enter hospice care surrounded by family.
More than three months later, however, Hope has proved to be quite a fighter. Receiving ongoing care at both Boston Children's Hospital and Andover Pediatrics and taking a slew of medications, Hope has gained weight and strength, and is now awaiting a liver transplant.
“She's got this draw about her that I think she captures hearts. People are just really amazed by her story,” Morrison said.
Morrison, a pediatric occupational therapist, adopted her eldest daughter, Katelyn, from China 13 years ago. She returned years later, numerous times, adopting daughters Lianna, 10, Mia, 9, and Hannah, 4, along the way.
It was on a trip last November when friends traveling with the family introduced them to Hope, a baby with a liver problem who had missed having surgery.
“I completely fell in love with China very, very unexpectedly. I was pretty determined to want to go back and use my skills to help the kids still living in the orphanage,” she said.
Already the mother of four, and with two of her daughters having the blood disorder beta thalassemia major, Morrison said she wasn't looking to add more responsibility to her life. But the family was concerned about the tiny baby with a skeleton-like frame and sunken eyes.
They reached out to doctors to run more tests and asked for a medical visa to bring her to the United States for treatment. The got permission in May — and Morrison carried a note explaining the situation on the plane ride home, in the event that Hope died en route.
“She was really, really sick. I was pretty shocked at her condition. Her skin was literally hanging off the bones,” Morrison said, adding that Hope's liver condition made it so she wasn't able to absorb nutrients, causing the emaciation.
“But she still had a little sparkle in her eye,” she said.
Based on Hope's condition, the Morrisons were expecting to bring the baby home and into hospice care. They coordinated with a palliative care team at Boston Children's Hospital.
“We were really prepared to just kind of come back here and at least have a family that would be with her so she wouldn't be suffering alone. I think that's what really was haunting us, that she was all alone. Liver disease is a pretty miserable thing to die from,” Morrison said.
Among Hope's issues were cirrhosis of the liver and malnourishment that had stunted her growth and caused her to be underweight. The team at Boston Children's set to work strengthening Hope with special formulas and medications. In the past few months, she has put on weight and achieved some developmental milestones, making her a better candidate for surgical procedures, including a liver transplant.
Dr. Maureen Jonas, the clinical director of Hepatology at Boston Children's who offered to care for Hope, is hopeful that the youngest Morrison will receive her transplant in the next few months.
“If she gets the transplant and she is in better shape than she is now, she's got a 90 percent five-year survival rate, and we don't expect it to go down much from that,” Jonas said.
However, if Hope doesn't receive the transplant, she would eventually die from her disease, she said.
While Hope remains jaundiced and underweight, she's headed in the right direction. Jonas said she hopes to keep strengthening her to make her an even better transplant candidate.
"We're just very happy with the way things are going,” Jonas said.
Lisa Kashinsky is a staff writer for the (North Andover, Mass.) Eagle-Tribune.