A week after giving birth to her twin boys in February of 2018, Amy Winkler stood in freshly painted baby’s room. Two matching cribs. Two matching mobiles. Two tiny babies sleeping soundly. Her only thought, “This is what I’ve always wished for.” Double feedings were the only thing keeping her up at night.
“I had just become a mother for the first time and things could not have gone better,” recalls Amy. “The boys had no complications and were healthy. My husband Nick and I were just really excited to move forward with being parents to Logan and Connor.”
Like many babies, Logan was experiencing mild jaundice after birth. But after he advanced passed nine weeks and it still hadn’t gone away, Amy and Nick grew concerned.
Amy remembers, “His eyes were not the milky white you’d expect to see in a healthy newborn. Something told me that things were just not right.”
Amy’s instincts were correct. A series of tests from a pediatrician’s office revealed that a key indicator called bilirubin was elevated – a classic sign that Logan’s liver was not properly functioning.
“That phone call was the worst day of my life,” says Amy. “I went from thinking I had a healthy baby to, ‘Oh my gosh, what’s going on?’”
Less than a week later, a surgeon at a local hospital diagnosed Logan with biliary atresia, a rare pediatric liver disease in which the bile ducts do not develop properly, eventually leading to liver failure. One in 18,000 babies each year are diagnosed with this condition, and it has no known cause or cure.
Amy and her husband Nick were told Logan would need surgery right away, but even then, it might not help their son.
Logan ended up being one of the kids that surgery didn’t help.
“And that was when I got the second worst news of my life,” says Amy. “The surgeon told us that only about a third of the children who have surgery for this condition will truly benefit from it due to the complexity of everything. He said the other ones need a transplant. Logan ended up being one of the kids that surgery didn’t help.”
At this point, Amy and Nick knew they needed a team that specialized in pediatric liver transplants and all the intricacies of helping an infant like Logan. And that’s when they found Michigan Medicine.
“In July of 2018, we started working with Michigan Medicine’s transplant team. And they were immediately helpful,” says Amy. “Nick and I knew Logan was in good hands.”
The operation Logan had as an infant is called the Kasai procedure, which attempts to establish a new path for bile to drain from the liver in place of the missing bile duct. A successful Kasai procedure causes the child’s jaundice to improve, buying important time for the child to grow and develop normally. The liver is not completely fixed though, and most patients with biliary atresia do end up needing a liver transplant at some point in their life. For those like Logan in whom the Kasai operation is not successful, essentially all of them will need a liver transplant before 2 years of age in order to survive. One of the most important challenges for children with liver failure is nutrition. It is common for them to need–as Logan did–formula through a tube that goes through the nose down into the stomach. And while getting them this extra nutrition is critical, it can cause side effects of its own such as GI upset and diarrhea. The buildup of bile in the body also causes other symptoms such as progressive jaundice and severe itching. These progressive symptoms diminish the quality of life of these young children, and place enormous burdens on the family and caregivers.
Of the many questions Amy and Nick had for their Michigan Medicine team, the most pertinent concerned how Logan would receive a new liver. They discovered that, unlike other organs, the liver completely regenerates and that healthy individuals can sometimes donate a portion of their own liver to someone in need, known as a living donor liver transplant.
“Naturally, my husband and I would do anything to help our son, but we discovered we weren’t the right match for Logan. My sister-in-law was a closer match, but her blood type was not the right fit,” says Amy. “As the summer progressed, Logan got sicker and by fall, we were told he would likely need a transplant within six months. So, the best chance for him meant putting him on the national waiting list.”
Liver transplantation is the only curative therapy for patients with end-stage liver disease, but it is a complex procedure with significant risks and potential complications. The decision to proceed to transplant should only be made when it is clear there are no other options. Furthermore, the number of patients waiting for transplant is far greater than the number of organs available for transplant. Many patients must wait for months to receive a donor organ, during which time they become more ill. Living donation allows children to be transplanted as soon as the donor and recipient are ready for surgery, when patients are less ill and more likely to recover successfully.
With Logan placed on the list in January of 2019, Amy was told to be ready any second for the call that would inform her a liver donation had become available. But four months later with no phone call, she was beginning to lose hope.
“When you’re put on the transplant list, you’re given a score of how sick you are. The higher the score, the better your chance of getting an organ when one is available,” explains Amy. “At his highest, Logan was 33 out of 40, which meant he was very sick. So, yeah, we were pretty nervous.”
But then something happened that neither Amy, her husband, or even most medical professionals could ever expect. Thanks to a partnership with a hospital in New York, a donor became available for Logan that was a perfect match.
Although University of Michigan Health has performed living donor liver transplants since 1996, these complex procedures remain uncommon. For that reason, surgeons and transplant centers rely on collaboration to share techniques and best practices in living liver donation. Beginning in 2017, the University of Michigan Transplant Center partnered with in another large transplant center in New York City with extensive experience with living donor liver transplantation. This partnership has led to the substantial growth of living donor liver transplantation at UM, but also offered a unique opportunity for Logan.
A nurse at Weill Cornell Medical Center in New York had come forward to donate a portion of his liver to a child in New York. Just before the scheduled living donation, the child was transplanted with an organ from a deceased donor. The nurse remained committed to donation, and the team at Cornell were aware of Logan, for whom the nurse would be an excellent match. After the donor agreed to donate to Logan, Dr. Sonnenday approached Amy to share this incredibly unique and generous offer.
“We were told that liver donations can come from people who have died, or they can come from people who are alive. I think what makes Logan’s story so interesting is here you have two amazing hospitals working together to help my son. And even though family members weren’t a match for organ donation, a complete stranger four states away volunteered to help out and offer part of his. It was truly so amazing,” says Amy.
While normally the living donor and transplant recipient operations happen in the same hospital, in this unique case the donor understandably preferred to have his operation at his home institution, close to his family and home where he would spend his recovery. Similarly, Logan and his family wanted to have his operation at UM, with the team to whom they had entrusted Logan’s care. Dr. Sonnenday and colleagues created a plan to allow this unique procedure – “remote living donation” – to occur. On May 21, 2019, a team at Cornell performed the donor operation, removing a portion of the donor’s liver which was placed in chilled preservation fluid, taken to a waiting plane, and flown immediately to Michigan. At Mott Children’s and Women’s Hospital, Dr. Sonnenday and the transplant team had begun to remove his diseased liver while the donor liver arrived. This unique procedure was the first reported example of remote donation in living donor liver transplantation in the United States.
Less than a week later, he was standing and playing with his toys. We were just so amazed and happy
Logan’s surgery took seven hours and had no complications. Following surgery, Amy and Nick were told that Logan would likely be on a ventilator for three days. And that’s when they witnessed more good news.
“Logan was only on it for 24 hours. And less than a week later, he was standing and playing with his toys. We were just so amazed and happy,” remembers a joyful Amy.
Today, now nearly four years old, Logan is thriving.
“Now he’s too active,” jokes Amy. “He loves to play outside, swing and play sports. He’s funny and sarcastic and tougher than nails.”
Amy and Nick are forever grateful for the care they received from their Michigan Medicine team.
“For everything the team did, the months of working around the clock for approvals from insurance companies and making sure everything was in place for the surgeries – we couldn’t have asked for a better outcome,” says Amy.
Now, Amy hopes to become a living liver donor herself. She has completed testing and been approved for donation. She is now waiting for a child in need for whom she is a match.
Says Amy, “If I can bring awareness to this and help someone else, then that is my goal. Plus, I really want to help Michigan Medicine. I thank God every day for them. They are an extension of our family and I know that Logan is here because of them.”
Do you have a remarkable patient story? A moment of breakthrough or discovery? We’d love to hear about it!