After she was stricken with a serious illness almost overnight, and then rushed to Boston Children’s Hospital where in a matter of hours she received multiple treatments—including an extremely rare liver transplant—Hannah Swift could be the most aptly named eleven-year-old in the world.
In an age where close monitoring, drugs and advanced therapies can prevent or delay transplant surgeries for weeks or months, Hannah’s story is an amazing example of medical collaboration where every minute counted in saving her life.
More than a stomach bug
Hannah had been coughing and vomiting for a few days when her mother Carolyn brought her to see a pediatrician. Given the season, both mom and doctor assumed Hannah had caught the flu, so she was sent home for a few days bed rest. After two days of sleep and chicken noodle soup, Hannah wasn’t feeling any better. A day later she was so weak that she needed help getting into the shower. After noticing a yellowish tint around Hannah’s eyes and skin, Carolyn called the doctor who said they needed to go to the local hospital right away.
“The doctor told us to pack a bag because we might not be heading home soon,” Carolyn remembers. “That was when I began to realize this was more than a stomach bug.”
After having her blood drawn and drifting off to sleep, Hannah awoke early the next morning in excruciating pain. She was vomiting, suffering severe headaches and was extremely disorientated.
Within hours her lab results came back with startling news; Hannah was in acute liver failure. She needed immediate care beyond what was available at the local hospital. Less than an hour later, Hannah and Carolyn were speeding towards Boston Children’s.
A race against the clock
By 5 p.m. Hannah had been admitted to Boston Children’s, and Carolyn met with hepatologist Scott A. Elisofon, MD, who explained that the liver’s main function is to make proteins, as well as process and breakdown toxins in the blood. Because Hannah was in acute liver failure, her body couldn’t do that anymore. As a result, dangerous toxins were circulating in her bloodstream and collecting inside her brain, making her confused and combative. The Intensive Care Unit and liver teams got to work trying to stabilize Hannah with medications and supportive care, but judging by her rapid deterioration, Elisofon and the liver team knew they could only try the medical treatments for a short period of time. If Hannah’s health didn’t turn around soon, she would probably need a liver transplant.
“We went from talking about flu to transplant surgery so quickly,” Carolyn says. “There was no time to really process what was happening.”
Early the next morning it was clear that the medicines weren’t working fast enough. Hannah was in a coma, her muscles had gone stiff and her blood was no longer clotting—all signs of advanced stage liver failure.
“Her liver had failed so suddenly and the toxic buildup in her system was quite rapid,” Elisofon recalls. “It was clear we needed to try something else if Hannah was going to survive.”
Hannah was quickly placed on the organ donation waiting list, but her team at Boston Children’s was worried. Even though a child in her condition would automatically be moved to the top of the list, it could be days before a donor liver became available. It was time Hannah simply didn’t have.
But luck was on Hannah Swift’s side. Within hours of being placed on the list, a donor liver became available—one of the shortest waiting times even senior members of Boston Children’s staff can recall.
The liver may have been available in record time, but there was a problem—it wasn’t compatible with Hannah’s blood type. Without a special treatment to “neutralize” her blood, her body would reject the new organ, possibly within minutes. Transplanting organs that are incompatible with the recipient’s blood is risky, but can be done through a procedure known as an ABO incompatible transplant.
Boston Children’s had not performed an ABO incompatible liver transplant in almost 20 years, and Heung Bae Kim, MD, Boston Children’s Pediatric Transplant Center Director and Hannah’s transplant surgeon had never done the procedure before. With time running out, he and the rest of the Boston Children’s team made the difficult decision to proceed with the ABO incompatible transplant because it was Hannah’s best chance at survival.
“Normally we’d wait for a more suitable organ to become available,” Kim says. “In Hannah’s case we didn’t have the luxury of time. Without that ABO incompatible transplant I don’t think Hannah would have lived more than a day or two.”
Like every other aspect of Hannah’s case, time was the biggest factor in getting her ready for transplant. She first needed plasmapheresis, a necessary process for ABO transplants where the patient’s plasma and blood cells are separated and the plasma is replaced with a blood type more compatible with the new organ. The process is commonly used to treat autoimmune diseases, but for a child with Hannah’s condition it’s almost never used in treatment.
“I had never done plasmaphersis to prepare a patient for an ABO incompatible liver transplant before, nor had anyone on our staff,” said John Luckey, MD, PhD, a transfusion medicine physician, who works for a joint blood transfusion program with other local Boston hospitals. “But given Hannah’s condition it was clear this was really the only option.”
After two hours of plasmapheresis both Hannah’s blood and donor liver were ready for transplant. Kim and his team removed her liver as quickly as possible—the longer it remained the worse her toxin levels became. Once her liver was out, the moment of truth arrived as Kim delicately secured the donor liver in place. With ABO transplants there is a heightened threat of hyperacute rejection, where the organ can fail within minutes of being transplanted. As Kim finished his work, he closely watched for signs that Hannah’s immune system was attacking her new liver.
“If a patient has an episode of hyperacute rejection the surgeon can actually see the organ turn black and die before your eyes. It can happen that quickly,” he said. “During those first few minutes I was very relieved to see it maintain a healthy color.”
Road to recovery
For a few days Hannah remained in a coma but showed signs of recovery. At first her limbs responded to touch, then there was eye movement; it wasn’t long before she was responding to verbal communication. Fourteen days after she arrived at Boston Children’s, near death with acute liver failure, Hannah was on her way home as a healthy transplant patient.
In the coming months Hannah will see a team at Boston Children’s Pediatric Transplant Center a few times per week to monitor her health and offer follow-up care. In time the visits will become less frequent, and eventually, with the exception of having to take anti-rejection medication, Hannah’s life will be the same as it was before she got sick.
Despite the severity of her illness, and incredible circumstances that allowed her to receive a new organ in time, Hannah remains very well adjusted. In fact, she sees the entire experience as almost dream-like.
“I really don’t remember everything that happened to me, which is good in a way, I guess,” said Hannah at a recent clinic appointment at Boston Children’s. “What I do know is that I’m very lucky. And I’m thankful to my mom, dad and everyone at Boston Children’s who saved my life.”
Hannah owes her life to the generous gift her organ donor made, as do thousands of other children like her. But there are still many more children in need—as of December of 2012, 1,735 pediatric patients were waiting for a new organ, and more are added to the waiting list every day. Are you interested in being an organ donor but aren’t sure how? It only takes 5 minutes can be easily done by visiting Donate Life’s website or through the Department of Motor Vehicles website.
Learn more about Boston Children’s Pediatric Transplant Center.