Jen was thrilled to give birth to a healthy baby boy in 2011. But as the weeks went on, she was worried that her newborn son’s Nate coloring was just not quite right. At five weeks old, doctors at Ann & Robert H. Lurie Children’s Hospital of Chicago (then Children’s Memorial Hospital) performed a biopsy on Nate’s liver and concluded that he had biliary atresia, a life-threatening condition in which a blockage forms in the tubes that carry bile from the liver to the gallbladder.
Doctors attempted to save Nate’s liver surgically. But when his health declined six months later, he was put on the organ donation list for a new liver in June 2012.
That September, Jen got the call that would change their lives. “My best friend Lori called me to say, ‘I’m a match!’ Nate was inpatient at the time, and I just started crying in the room. The nurses and fellows were there with me, asking what was going on, and when I told them they started crying, too.”
In October 2012, surgeons at Lurie Children’s removed Nate’s liver and transplanted a part of Lori’s liver. Last fall, his family, friends and caregivers at Lurie Children’s celebrated the five-year anniversary of his transplant with a special party that raised funds and awareness for organ donation. According to Jen, the staff who has cared for Nate are like family.
“Dr. Mohammad is Nate’s primary attending physician,” she said. “He was in the room the night we found out he had biliary atresia, and it means so much to have someone who’s been with us since day one all the way through now and is still there for him many different ways.”
Over the past few years, Nate’s family and clinicians at Lurie Children’s have worked closely together to manage his health and prevent complications. “Dr. Mohammad and his team take my intuition and my knowledge of my son to heart when they make their decisions. They’ve done their job in getting to know us clinically, but also personally.”
Medical research played an important role in Nate’s journey as a way to create healthier futures for other children with biliary atresia. “When Nate was diagnosed, one of the clinic research nurses asked if we wanted to be a part of research on the condition and we were like, ‘Absolutely.’ With biliary atresia, a breakthrough is not going to happen overnight. Even if it doesn’t help our son right now, it can help somebody else. Even just an answer of why it happens is one step in the right direction.”
As an organizer of an online support group for parents of children with liver diseases at Lurie Children’s, Jen has also become a vocal advocate for families. She is currently serving on the parent council for a mobile app designed by a Johns-Hopkins transplant physician called Liver Space that connects parents to useful information about liver disease, enables them to graph labs and meet up with other people within the liver disease, and more.
This year, Nate started kindergarten—a milestone Jen said she feared she would never get to see as his mother. Since his transplant, he’s also become a big brother to his younger sister Allyson, now 3, who Jen describes as one of his closest friends. “She’ll come with when we take him to appointments and she comforts him. She’ll say, ‘If you don’t cry, you’ll give them good numbers and your liver will be happy!’”
Today, Lori and Jen remain close, and Nate is beginning to understand the magnitude of Laurie’s gift.
“Nate is now really starting to piece things together and understand he has a piece of her for the rest of his life. It’s just amazing. You really can’t say thank you enough.”
Living-donor liver transplant is an option that is offered by Lurie Children’s — working with Northwestern Memorial Hospital — to the parents of infants and young children who require a liver transplant. Living donation, in general, will only be considered for recipients who weigh 20 kilograms (about 44 pounds) or less.
Selecting a Donor
The potential living liver donor must meet certain age and health criteria, as well as have the same or compatible blood type as the recipient.