“My name is Michaela, and I got a liver transplant.”
I looked up, startled to see this young, beautiful blond girl—she must have been nineteen or twenty—talking about how her life had been saved by someone she’d never met. By that point in my surgical career, I thought I’d heard everything, but for some reason so many aspects of Michaela’s story gave me goose bumps.
MICHAELA GREW UP in the town of Spring Green, Wisconsin, about forty-five minutes from Madison, a town with an approximate population of sixteen hundred, 97.5 percent of them white and 100 percent Packers fans. Michaela had a normal childhood. She was a dancer and a swimmer, always healthy, never missed a day of school.
One Monday night, the family had tacos. The next day, Michaela felt sick and started throwing up. Everyone figured it was the tacos, and blamed Michaela’s mother, Wendy, who’d made them. But Michaela kept vomiting, straight through the night and into the next day. She missed school that Wednesday, breaking her perfect attendance streak. When she was still sick on Thursday, the family knew something was truly wrong. When Michaela’s dad, Michael, got home from work, they went to the local hospital. After doctors saw Michaela’s labs, she was transferred immediately to Children’s Hospital, in Madison. This was more than just bad tacos.
Michaela’s parents spent the night with her at the hospital. Early the next morning, my partner Dr. D’Alessandro, with Beth, our pediatric coordinator, came to see them. The news was bad: Michaela was very sick. Her liver was failing. She likely had Wilson’s disease, which at the time meant nothing to the family.
Wilson’s disease is an autosomal recessive condition, which means that in order to get the disease, you need to acquire one copy of the abnormal gene from each parent. It is caused by a mutation in the gene that encodes a particular protein. It is quite rare, occurring in only about one out of every thirty thousand people. And as with most autosomal recessive diseases, patients cannot usually identify other family members who have it. The defective protein in the case of Wilson’s disease is responsible for binding copper to a carrier protein to be shipped out of the liver and into the bile or bloodstream for disposal. Without this functional protein, copper builds up in the liver, and over time, this can lead to inflammation and liver damage. While Wilson’s can present in a number of different ways, about 5 percent of patients show up to the hospital suddenly in liver failure, often in their teen years, and those patients will likely die without a transplant. Perhaps the only good news here is that children who present with fulminant (i.e., severe and sudden) liver failure from Wilson’s disease are eligible for 1A status on the transplant list—that is, they go to the top of the list.
Michaela’s mom signed the paperwork immediately. When the liver is as sick as Michaela’s was, time is of the essence. Michaela was listed at 4:05 p.m. on Friday, November 11. Now she just had to wait for someone to die.
By Sunday, Michaela was obviously close to death. She was no longer responding. They moved her to an ICU, where she could be monitored closely. We urgently needed to find her a liver at this point, so Dr. D’Alessandro was contemplating accepting something more marginal, maybe an old liver, a fatty liver, one with a little fibrosis. While you hate to do that with such a young recipient, at the same time, it is a race against the clock.
ONE WEEK AFTER the accident, on Sunday, November 13, a doctor told Lori that C.L. was brain dead. His heart was still beating, but his brain was no longer functioning. The doctor asked about organ donation, whether C.L. might have wanted to give this gift of life. Lori had never talked to her son about this—she herself was signed up to be an organ donor, but she wasn’t sure what he would have wanted. She looked at him and thought about what he used to say—that he would always be with her. She also remembered something else: C.L.’s stepdad, Gene, the man who’d helped raise him since he was three, needed a kidney. She had been separated from Gene for ten years, but he was still the one C.L. called “Daddy.” If there was ever such a thing as a sign from above telling her what to do, Lori knew this was one.
“Yes,” she said. “He wants to donate his organs.” She knew C.L. would have wanted to donate a kidney to his daddy, but she also had an amazing feeling, a feeling that hit her so strongly it took her breath away. She thought to herself, That’s not the only blessing coming my way.
Procurement for C.L., Rockford, Illinois, November 14, 8:00 p.m.
I wasn’t at this particular procurement, but I can imagine how it must have gone. I suspect C.L. was referred to the OPO upon his admission—it is federal law that all potential donors be referred for consideration for organ donation when they meet triggers that suggest imminent death, including being on a ventilator with severe neurological injury. C.L. likely was referred when he first came to the hospital, on November 4. He was still receiving care with the goal of making him better, but at some point, his doctors must have come to the conclusion that he wasn’t going to improve. He underwent brain-death testing, which includes both a physical exam and brain imaging, and it was determined that he was brain dead.
Lori’s two options now were to disconnect the ventilator or to pursue organ donation. She chose the latter.
This decision undoubtedly started a flurry of activity. Numerous blood tests had to be sent, including those that analyze organ function, those that look for any infections in the blood, and those that identify blood group and more specific genetic typing that can be used to assess recipient compatibility. Various tests may have been run to assess specific organ function, including echocardiograms to look at the heart, and blood gases to assess the lungs. In C.L.’s case, his heart and lungs were not considered for transplant, due to the injury he’d suffered in the car accident. Because of Lori’s inquiry about directing a kidney to C.L.’s stepfather, the coordinators contacted the OPO where Gene was listed, starting the process of confirming his blood type and eligibility, and had him brought to the hospital. A match run was conducted for each potential organ, and then phone calls were made to the appropriate surgeons to discuss their interest in C.L.’s parts.
Dr. D’Alessandro received the first call. I am sure he jumped at the offer.
My partner Jon Odorico likely was called about C.L.’s pancreas. Jon would go through the match run and see if he could get C.L.’s pancreas with a kidney.
A different coordinator was charged with calling all the potential recipients to alert them to the offers, bring them into the hospital, let the OR know about the impending transplants, and let our fellows know that they were about to be busy for the next twenty hours.
At the same time, our techs from the tissue-typing lab were running cross matches (i.e., mixing potential recipient serum with donor blood cells)—once his mother agreed to the donation, C.L.’s blood had been shipped to our center from Rockford—to make sure the recipients wouldn’t reject the organs acutely.
Once the recipients were chosen and called in, the coordinators would set up transportation for the procurement teams. This could involve teams from multiple programs and states, and usually involved multiple planes coming from different airports. The timing needs to be coordinated with the operating rooms at each hospital, which may involve calling anesthesia teams, scrub techs, and circulating nurses. Weather also has to be factored in, although, based on my experience, these pilots appear to be willing to fly in anything.
Once everything was in place, C.L. was brought to the OR. He was placed on the table and positioned, prepped, and draped like the thousands of other people across the country who underwent surgery on that November evening.
The nurses at Children’s Hospital would have started going through their checklist to prepare Michaela for surgery. Dr. D’Alessandro would wait to call her down to the OR when he heard that the donor liver looked good and that the procurement team was getting ready to take it out.
Just after 8:00 p.m., they made their incision: a long midline going from the sternal notch (bottom of the neck) to the pubis. They opened C.L.’s belly and t
hen used a sternal saw to open his chest. Retractors were placed exposing all his organs. His liver, which came into view right after the belly was opened, looked perfect. Why wouldn’t it? It was programmed to live many more years, even though its host wasn’t. His aorta was exposed, and a first glimpse of his kidneys and pancreas confirmed that they looked perfect as well. Everything was alive and working in perfect unison except his brain.
The team then spent the next several minutes dissecting out the vessels leading into the liver, figuring out if there would be variant anatomy. (As is the case for all organs, there is what we call “standard anatomy,” which the majority of patients have, and then normal variations, which do not indicate any abnormality or risk for disease. In the liver, just over half of people have standard anatomy of the hepatic artery. The rest have something different. The most common variations include replaced arteries to the liver, meaning that either the right artery comes off a different spot in the arterial tree than normal, and travels deeper in the body, called a replaced right hepatic artery, or the left artery similarly comes off a different spot and travels more on the left side of the body, called a replaced left hepatic artery. This doesn’t affect normal function of an organ, but matters a lot in transplant.) It’s crucial not to injure these vessels. They need to be preserved with the organ, and plugged into the recipient when doing the transplant. In C.L.’s case, he had standard anatomy. The vessels were then looped, everything was dissected out, and cannulas were placed in the aorta and portal vein. A cross-clamp was placed on the aorta just as it came out of the heart, and anesthesia turned off their monitoring machines. The cold flush began flowing into the cannulas, and the right atrium of the heart was cut to let all C.L.’s blood be drawn up into suction devices. His blood was rapidly replaced with clear, sweetly smelling preservation solution, and his organs became pale and cold. The heart sputtered, took its last few, rather uncoordinated beats, and then went silent. It would not beat again. Ice was poured into the abdomen and chest. C.L. was no more. Now he was broken down into his parts: a liver, two kidneys, and a pancreas. And these parts were perfect.
Liver Transplant for Michaela, Madison, Wisconsin,
November 15, 1:45 a.m.
Michaela was wheeled into the operating room early Tuesday morning. Dr. D’Alessandro began opening her belly just before 3:00 a.m. When he entered, he was greeted with one liter of ascites, just enough to bathe her organs in the sweat of the liver. Her liver was shrunken and cirrhotic, a sign that her disease had been going on for some time. Michaela had no inkling of the battle her liver had been waging for years, fighting against the copper that was killing her off cell by cell. Even though our organs are part of us, we don’t have to understand what they do every day, what they might be going through. Each of our organs works for us in perfect concert, never missing a day and rarely complaining. We are unaware of their struggles, and generally can’t feel them unless they push up against our abdominal wall and inflame the nerves there, or if they become extremely swollen.
Michaela’s liver was done for. It was through with making her clotting factors and cholesterol, breaking down ammonia and other toxins. It was done with manufacturing her bile and collecting it in her gall bladder to be concentrated and then squeezed out into her intestine to help her break down fats and other foods.
Dr. D’Alessandro quickly removed Michaela’s old, shrunken liver and dropped it in a basin. He asked for the glistening new liver and placed it in Michaela’s belly. He proceeded to sew it into place, connecting the hepatic veins, the portal vein, the artery, the bile duct—and then it was done. It was Michaela’s now. It whirred back to life, not minding at all that a new heart was pumping blood through it. It immediately started pumping bile into Michaela’s intestine—not her gall bladder; we always remove this at the end of a liver transplant—and filtering and detoxifying her blood. Is it possible that the other organs in her body (her duodenum and jejunum, her kidneys and heart, and even her command center, the brain) paused for a second, wondering who the new recruit was? Perhaps the kidneys, which sometimes sputter after a transplant, offered mild resistance to their new teammate. Ultimately, though, they all accepted the new guy and moved on. These organs that grew up together in the small, white town of Spring Green weren’t bothered in the least that a liver from a young black man from Rockford who had led a troubled life, even spent time in jail, had joined them. Black or white, yellow or brown, gay or straight, genius or moron, rich or poor, American or foreign—the organs look the same and will all function the same.
After just a few hours, Dr. D’Alessandro was already closing Michaela back up, hiding the organs in their container, their host, their home that was new to one of them.
One of Michaela’s only memories of her hospitalization is of waking up from surgery with an incredibly strong craving for a hamburger. She found this odd, since she didn’t like hamburgers, or meat in general. When she was finally able to eat one, she found it delicious.
Michaela went back to school right after Christmas break—all told, she missed about a month—and yet she was changed forever. The thought that someone she didn’t know had saved her life after death was so powerful to her. She couldn’t wait to meet her donor’s family. So, on the day she got home from the hospital, she wrote the first of many letters.
“I just kept it really simple. It was . . . just saying who I am and what I did . . . and you saved my life, otherwise I wouldn’t be here, and I thanked him.” She included her senior photo with the letter. Michaela wrote four letters in all, and every day she went to the mailbox looking for a response, but for months, none came. She wanted to know something about the person who had saved her, whose liver sat inside her body. All she knew was that he was young, had spent some time in prison, and had died.
“I knew about the jail thing, but I never knew [why],” she said. “I know it’s not that he killed someone, because he wouldn’t have been able to get out . . . but even if he did . . . I’m not going to judge him, because he saved my life.”
FOR SIX MONTHS, Lori grieved the loss of her son. She took some solace in watching her ex-husband Gene’s life turn around after his kidney transplant, but she missed those nights when C.L. would plop down on her bed to talk. She felt sad that she hadn’t been able to straighten him out, and sad that his children would grow up without a father. She thought about responding to Michaela’s letters a few times, but something held her back. She wanted to know who was carrying around part of her son, but at the same time, she was sensitive to the possibility that the recipient wouldn’t want to know about C.L., what it was he had done, what he had been like. Many emotions were running around in her head, holding her back.
Finally, six months after C.L.’s death, a coordinator from the OPO called her to check in. Did she want to reach out to one of C.L.’s recipients?
It was time, Lori thought. She wasn’t a fan of writing letters, but she forced herself to do it. She kept it short, but felt compelled to write that C.L. loved to eat hamburgers.
The day the letter finally arrived, and Michaela held it in her hand, her mother, Wendy, quickly pulled out her phone and filmed her daughter reading it. Michaela’s hands were shaking as she opened the envelope. She was always a bit shaky—the antirejection medicines tend to cause that—but much more so now than normally.
Michaela squealed as she yelled out, “He likes hamburgers! I knew it!” Tears streamed down her face.
The brief letter included C.L.’s name. Michaela fired up her computer and opened Google’s browser. (Wouldn’t you?) She typed in C.L.’s full name. At first, she saw a bunch of unrelated posts. Then she typed in his city and the word obituary—and there he was, staring her in the face. He looked young, serious, and . . . black. She felt startled, and wasn’t sure why. She had nothing against black people; she really didn’t know any. She had almost no black classmates and lived in a town that was uniformly white. She tried a few new searches and quickly found a few articles about C.
L.’s death. Her shaking intensified.
There was a picture of a smashed-up car, a story about a shooting at a shady nightclub, a car chase, and more shooting. Police thought maybe the shooting was gang-related. Her heart was beating wildly. Would the gang come after her now, to finish the job? Would they come for C.L.’s liver?
After a few minutes, Michaela calmed down. She searched a bit more and found a Facebook post from C.L. dated just a week before his death. He wrote that he was done with this “Rockford shit.” He wanted to grow up and be a better man. Michaela’s fear turned to sorrow, and then gratitude. Then she noticed something funny. That night at the nightclub, when he fled, he was in an Equinox, which was strange. She drove an Equinox.
Michaela’s first phone call with Lori was that night. The second Lori heard her voice, she knew who it was. They both started crying. They agreed that they would meet in person.
THEIR FIRST MEETING was in a Rockford restaurant. Michaela brought her parents and her boyfriend. Lori brought her whole family, including C.L.’s stepdad, Gene. Everyone was nervous at first, except Lori. She immediately ran up and gave Michaela a big hug. Lori hung on to her and yelled out, “This is my daughter! This is my daughter!” Their connection was immediate. Lori shared stories about C.L., Michaela told Lori and her family all about her life, and Gene told stories about his.
Since that time, they have gotten together on numerous occasions. Michaela keeps Lori updated on everything in her life. At one point, when Michaela had a minor issue with her liver—a little bump in her labs that ended up being nothing—Lori called multiple times a day to find out what was happening.
About three years after C.L.’s fatal accident, Lori posted on Facebook that she would always miss her boy C.L., but she would stop mourning now. She had Michaela to go out there and make the world a better place, and she would do this for C.L. Lori now knew what C.L. had meant when he said he would always be with her. Michaela was her daughter now.
How Death Becomes Life Page 24
