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Hoping for a sense of normal: Michign toddler needs a living liver donor

Molly Hermann holds her son, Blake, 2, while Dr. Najeeb Zoubi looks on at Children’s Hospital of Michigan. Blake is in need of a liver transplant from a living donor.

LYON TOWNSHIP — Blake Hermann itches incessantly, causing his skin to bleed, and his mother to cry.

To make it stop, the almost 2-year-old needs a new liver. His parents and doctors hope that donation comes from a living donor.

“He itches to the point of bleeding and scabs and it’s awful,” Molly Hermann, Blake’s mother, said through tears. “Lotions and creams don’t really work, because that is for the surface (of the skin) and this is coming from inside.”

Blake has type 1 progressive familial intrahepatic cholestasis, a rare genetic disorder in which bile does not drain from the liver. Instead, it builds up in liver cells. Besides severe itching, the disorder causes jaundice and malabsorption, resulting in nutritional deficiencies.

His disorder is a disease that Dr. Najeeb Zoubi, director of the pediatric liver transplant program at Children’s Hospital of Michigan and Blake’s doctor, has seen in only about 10 patients since his arrival at the hospital in 2010. Between two and five children at CHM receive transplants per year and most receive livers from deceased adult donors.

Blake is younger than most children who need a liver transplant, but all of the numerous medications doctors have given him have failed to help. Blake was hospitalized this past weekend for dehydration and Molly Hermann is praying her son remains stable while awaiting a transplant.

Blake Hermann, almost 2, with his mother, Molly Hermann, and Dr. Najeeb Zoubi, his liver doctor at Children’s Hospital of Michigan. Blake needs a liver transplant.

“His quality of life is very poor,” Zoubi said. “He can’t sleep, his parents can’t sleep, he is scratching his skin, and it’s affecting his development.”

Despite all these issues, there are sicker patients who will be prioritized in front of Blake on the list for a liver from a deceased donor, leading his doctors and family to seek a living donor to help him sooner.

Zoubi noted that while there are potential complications for a donor, they are low. The surgery has a mortality rate of only 5 deaths per 1,000 performed.

A gift of life from a living liver donor

The liver is the only organ that can regenerate itself. Up to 60% of the liver can be gifted from a living donor, but only a small segment is needed for Blake. Just 265 people in Michigan, and 7,261 nationwide, have given part of their liver as a living donor in the last 36 years, according to the .

A majority of all living donors are family members or friends of the recipient, but donations from altruistic strangers also happen regularly, said Children’s Hospital of Michigan transplant surgeon Dr. Ahmed Nassar, who will transplant the donated piece of liver to Blake if a donor is found.

Molly Hermann matches her son’s O blood type; however, she and Blake’s medical team are hopeful that an empathetic stranger will assist the family so she can care for her son in his recovery, as well as continue to take care of Blake’s twin sister Anna and his brother, Mark, 3.

“After either laparoscopic-, robot-assisted or traditional surgery, living donors typically spend three to four days in the hospital then recover at home for a couple of weeks,” said Nassar, who also performs adult transplants at the Henry Ford Transplant Institute nearby. “The miraculous part about this is the donor’s liver and the piece of liver transplanted to Blake will regrow to normal size within about six to eight weeks, when they can typically resume all normal activities, and Blake’s liver will continue to grow with him. A pediatric liver transplant recipient can potentially live the rest of their lives with that donated liver.”

In Michigan, nearly 200 patients are currently awaiting a liver and they are prioritized according to the extremity of their illness, said Michigan President and CEO Dorrie Dils. Last year, there were 256 livers transplanted from deceased donors in Michigan. By comparison, only 15 livers were transplanted from living donors.

One of those was from in August.

Herrera, a mother of three and 46 at the time of the transplant, said she had always wanted to be an organ donor and knew it was time when she saw on social media that her former co-worker’s husband, in his 20s and with a new baby, was struggling with a failing liver.

The vetting process was extensive, she recalls. Donors have to match blood type with the recipient and be healthy, but she notes that other physical requirements are likely less than what people may think. She describes herself as the “average Joe blow mom who likes to drink socially, but with a very healthy liver.”

The Hermann family: Ken is holding twins Blake and Anna, 1, while Molly holds Mark, 3. Blake Hermann is in need of a liver transplant.

“They vet you psychologically, socially, physically and financially,” Herrera said. “They want to make sure this adds to your life and doesn’t take from it… I had no angst. My body had the potential to do this, it just felt so incredible and impossible to feel anything but eager to do it. Your body has the potential to give someone their quality of life back and you can go on to live a healthy normal life. Of course there is risk for complications, but I had no hesitation at all.”

All her medical costs were covered by the recipient’s insurance, although time off work after to heal was not.

Her children, ages 13, 18, and 20 at the time, were all supportive and her mother stayed with her for a week after the surgery in which 60% of her liver was transplanted into the recipient.

The recipient died shortly after the transplant, but despite the devastating outcome, Herrera said she has no regrets and would do it again.

“This thing we can do, it brings risk, but the possibility of reward for that person in need of a liver is so much greater in my estimation,” said Herrera, named Gift of Life’s 2024 Nurse Champion for Michigan. “Look at the potential payout – that 2-year-old’s parents can watch him grow up, he can become a dad and a grandpa one day…

“Waiting until he’s on top of the (transplant) list when he’s so much weaker and sicker, he would be climbing out of a much bigger hole. People at the top of the list don’t have a lot of time to wait for the phone to ring. What an opportunity to beat the buzzer and take away his suffering, if you can knock a year off his wait.”

Blake Hermann at the library. The toddler who loves books is in need of a liver transplant from a living donor.

Molly and Ken Hermann hope the phone rings with news that there is a donor who wants to give their son an opportunity to grow and live the life of a normal little boy.

A little boy who eats more of the yogurt and waffles and macaroni and cheese that he loves; one that gains weight and sleeps well; and most of all, one that doesn’t itch from anything more than maybe a mosquito bite from playing outside.