Just two weeks ago, doctors at Boston Children’s Hospital did not know if Hannah Swift would live through the night. The 11-year-old’s liver was failing, and she needed a new one immediately.
Doctors did not know why her liver failed, but they quickly placed her on a transplant list and tested family members to see if any were a match to be a living donor. Her father was, but preparing him for the surgery would take too long and Hannah was dying.
Then a liver became available from someone who had died, but there was a problem: The donor’s blood type was incompatible with Hannah’s body.
The West Barnstable fifth-grader did not have long, so on Jan. 31 doctors rushed her into surgery, performing an extremely rare ABO incompatible liver transplant, something done in less than 1 percent of all liver transplants performed with organs from deceased donors nationwide since 2007.
“We would not do this type of transplant on a more stable patient,” said Dr. Heung Bae Kim, surgical director of the hospital’s liver transplant program. “We all felt she just had hours to live. She was in a coma. This was it.”
Carolyn Swift thought Hannah’s fever and cough were symptomatic of the flu, which her other three daughters had contracted.
Before her surgery, doctors had to trick Hannah’s body into not automatically rejecting the donated organ. They swapped most of her Type O blood plasma for the plasma type of the donor liver, which lowered the antibodies in Hannah’s blood and kept them from attacking the new liver.
When Hannah woke up from surgery, she had lost strength in her right side, her ability to walk, and her vision was blurry.
But within days she was walking, writing, and reading.
On Thursday, Hannah was discharged and on her way to a full recovery.
Before heading home, the slight girl with shoulder-length hair sat in her 10th-floor room, wielding a colored pencil, drawing pictures. One depicted the ocean and the other an orange flower. “I’m feeling great actually,” said the girl. “I just finished a book, ‘The Candymakers.’ It was 400 pages.”
The girl with the hockey-stick-shaped incision on her belly never suffered any pain after surgery, giggling when doctors touched the cut, her mother said. The lack of pain was a side effect of the coma, according to doctors.
The three-week ordeal still seems surreal to Hannah’s mother.
Carolyn Swift, a kindergarten teacher, thought Hannah’s fever and cough were symptomatic of the flu, which her other three daughters, including Hannah’s twin, had contracted. “The whole family had been sick with stomach bugs and all kinds of things.”
It was not until Hannah broke out in a rash and started turning yellow that Swift knew something more serious was going on.
“She looked like she was tanning right before my eyes,” Swift said of her fair-skinned daughter. “I knew her color didn’t look right.”
A pediatrician sent her to the emergency room at Cape Cod Hospital, thinking it was dehydration, Swift said. But when test results came back the next morning indicating her liver was failing, doctors transferred her to Boston Children’s. By the time she arrived, Hannah had stopped making eye contact and was trying to pull out the tubes providing her with fluids, her mother said.
Hannah looked up from her drawings and said she remembered very little of what her mother was describing.
“I remember the rash a tiny bit,” she said. “I just remember being in bed, throwing up.”
As Hannah began to recover from the surgery, Carolyn Swift and her husband, Christopher, had to explain to their daughter what had happened. “We told her she had surgery, and she got a new liver,” her mother said. “Days later she asked if it came from a dead person, and she got really emotional about it.”
Hannah said she did not know the identity of the donor. “And I was just really upset,” she said. “It was a little strange . . . not anything bad or anything.” Just about everything about Hannah’s case is rare.
According to data from the New England Organ Bank, the procedure to save Hannah’s life was performed 107 times in the past five years, while there were 36,030 traditional liver transplants in that period.
And this was the first transplant the hospital has done to treat acute liver failure in eight years, Dr. Kim said. Most children, he said, recover from such failures without needing an organ transplant.
About 72 percent of people who undergo a traditional liver transplant live for at least five years. The success rate for ABO incompatible liver transplants is about 10 to 20 percent lower, doctors said. Because of the blood type difference, Hannah takes more medications than most organ recipients.
She’s taking antirejection medications, and for several months she will be on antiviral and antifungal medications, said Dr. Scott Elisofon, one of her transplant doctors. Hannah will also take immunosuppressants for life, though hopefully in reduced dosages, he said.
Exactly why her liver failed may never be known, though.
“In 50 percent of cases, we never know what the cause is, even after we take the liver out,” Elisofon said. “With acute liver failure, you can get sick very quickly. We met her right at the end of her decline.”
Looking at his patient, he said: “Boy, she looks great.”
Hannah’s mother tells her daughter, who was born prematurely, that she possesses an unfathomable inner strength. And now, Carolyn Swift is telling relatives to donate what they can: blood, plasma, and organs.
Follow her on Twitter @akjohnson1922.