ANDOVER, Mass. — Sitting on a pink blanket surrounded by baby toys and picture books, 17-month-old Hope Morrison watched one of her four older sisters dip a wand into a plastic container.
Lianna, 10, blew the bubbles toward Hope, while Katelyn, 13, rubbed her baby sister’s head affectionately. Their mother, Cindy Morrison, watched as Hope followed the bubbles gleefully, smiling when one popped near her face.
A few months ago, this family moment might have seemed unfathomable for Hope, 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.
Considered to be dying, Hope seemed unadoptable.
But the Morrison family – all four girls are adopted from China – didn’t give up on baby Hope. They pushed to adopt her and bring her home to Andover under the notion she could enter palliative care surrounded by family.
More than three months later, however, Hope has proved 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, by her tenacity, by her sweetness,” Morrison said. “She’s really sweet and gentle and kind, as much as a baby can be. It’s just really amazing.”
HELPING CHINESE ORPHANS
Morrison, a pediatric occupational therapist, adopted her oldest daughter, Katelyn, from China 13 years ago.
“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.
Return she did, numerous times, adopting daughters Lianna, Mia, 9, and Hannah, 4, along the way. It was on a trip last November that friends traveling with the family introduced them to Hope.
A nurse said Hope had a liver problem, that she had missed surgery. They said, “It’s too late, it’s too late.”
At first, Morrison didn’t think too much about Hope, saying that she had heard similar statements in orphanages before. But that changed after spending a day in the orphanage’s nursing room.
“When it was time to leave I went into the little nursing room she was in and laid her in her crib and she started to cry and looked at me and moved her hand towards me,” 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, with plans to return her to China and place her on an adoption list.
“Nothing seemed to pan out, the doors just kept closing,” Morrison said.
By March, Katelyn began pushing her mother to do more for Hope.
“Just seeing her in the orphanage, laying in the bed,” was a source of motivation, Katelyn said.
Her mother cautioned her that the doors could be closed again. But this time, they weren’t. On May 1, the Morrisons got permission from Chinese government officials to come and get Hope. They left five days later, arriving May 7.
LIKE A NEWBORN, AT 14 MONTHS
“She was really, really sick. I was pretty shocked at her condition. She was definitely like a newborn even though she was 14 months old. 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. Morrison even traveled on the flight with a note explaining the situation in the event Hope died en route.
“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.
At Boston Children’s Hospital, Dr. Maureen Jonas had been in contact with Morrison leading up to the adoption and offered to help, despite having little medical information to work with about Hope’s condition.
“We knew she was going to be sick looking. We knew her weight for a 15-month-old was more like the weight of a 3- to 4-month-old. We knew she was going to have a sick liver,” Jonas, the clinical director of hepatology, said.
BETTER CANDIDATE FOR SURGERY
When Hope arrived, she was chronically ill and “didn’t have much time left if she stayed where she was,” Jonas said.
Among Hope’s issues when she arrived at Boston Children’s were cirrhosis of the liver and malnourishment that had stunted her growth and caused her to be underweight. Some of her vitamin levels were “unmeasurable,” Jonas said.
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.
Jonas 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. “Her vitamin levels are still very low, we’re still pushing that. She’s getting used to her new family, her new surroundings, certainly every day that goes by she’s in a little bit of a better place.”
Back in Andover, Hope sat between her mother’s legs, cooing over one of her favorite picture books.
When she first arrived at the Morrison home she was essentially a newborn, eating every one to two hours around the clock, unable to hold her head up. She lacked the strength to even laugh when being tickled.
“Now she can sit by herself, she’s very engaging. She’s like a little sponge, she’s trying to talk. It’s just crazy miraculous,” Morrison said.
The family travels into Boston about three times a week for the daughters’ various medical treatments and checkups, all covered through Morrison’s health insurance. Hope has avoided hospitalization since coming to the United States.
She continues to be fed about every two hours around the clock – strawberry-flavored PediaSure Peptide, for children with absorption issues because of liver disease – along with the occasional Creamsicle.
A network of friends and family, including Morrison’s parents in Andover, pitch in to help, from cooking meals and bringing groceries to driving the girls to school and camp.
A single mother, Morrison said she’s also received support from her church in Lexington. An old friend started a GoFundMe page that’s raised more than $7,000 to support the family.
“Right now I have to stay home full-time to take care of (Hope), so people have been helping financially. I have someone paying my mortgage for the next year,” Morrison said.