A new level of care and convenience has come to Central Florida for children and the families of children with advanced liver disease. This new partnership will bring lifesaving care close to home for dozens of families over the next few years, alone. Read on to learn more about pediatric liver disease and the latest in pediatric liver transplant surgery treatments. This blog will walk through what pediatric liver disease is, signs and symptoms, treatment options and information about the pediatric transplant program.
What is Pediatric Liver Disease?
Cirrhosis is a condition that is often associated with people later in life, but the condition really just means a late stage of liver disease caused by any number of diseases and disorders that you can be born with or develop sometime after. Scar tissue forms when the liver’s cells are damaged and the scar tissue then blocks blood flow which causes waste products to build up in your body. Biliary atresia is a rare chronic disease that occurs in infants when they are born with a blocked bile duct, which then leads to cirrhosis of the liver, liver failure, and ultimately a liver transplant.
Signs and Symptoms
Early in the disease it’s unlikely that any signs or symptoms will be obvious or recognizable but as the disease progresses and scar tissue starts to add up and children may experience abdominal swelling which can be painful or sensitive to touch, as well as poor appetite and weight loss.
Later in the development of the disease when the blood flow is more significantly blocked, and waste products begin to add up jaundice will set in which is marked by a yellowing of the eyes and skin and a darkening of your urine.
In infants it is difficult to understand these signs and symptoms because they cannot communicate how they are feeling so seeking a pediatric hepatologist like Regino Gonzalez-Peralta, MD is the key to understanding if these signs and symptoms are related to liver disease.
Why Treatment is Critical
Cirrhosis can’t be reversed, so catching it early is important for the best outcomes. Treatment for pediatric liver disease comes down to the following — Identifying and mitigating the causes, preventing more damage to the liver, managing symptoms and any complications, and managing any other medical conditions that may be contributing to the disease.
When treatments have failed and late stage liver failure is being faced, a liver transplant is required. To learn more about the liver transplantation process see out Liver 101 blog.
How Pediatric Liver Transplants Save Lives — Teegan’s Story
In 2018, Elizabeth and Zach had their first child, a beautiful baby girl they named Teegan. After only being home from the hospital for two days, they were called back in. Baby Teegan’s jaundice wasn’t going away and she was diagnosed with biliary atresia.
Fortunately, for these first-time parents and Teegan, the recent partnership between AdventHealth and the Hillman Center for Pediatric Transplantation at the University of Pittsburgh Medical Center Children’s Hospital meant her life-saving treatment was close at hand.
After months of interim treatments, and then only 39 days on the liver transplant waiting list, 8-month old Teegan got her new liver. A short recovery time later and she was released from the hospital with a send-off that her parents won’t soon forget.
Compassionate Care Close to Home
Our approach to care at AdventHealth has always been both personalized and compassionate, which can sometimes take our patients and their families by surprise. Teegan’s family was unprepared for the warm send-off that awaited them.
“When she got discharged there were a lot of people there, I mean a whole lot of people there,” says Zach, Teegan’s father. “It just goes to show that the people there actually care. A couple of the doctors were on FaceTime because they couldn’t physically be there. And it meant a lot, it absolutely meant a lot.”
“The staff here is amazing. It feels like a family,” says Elizabeth, Teegan’s mother.
“I think it’s awesome to have a staff that cares that much beyond the operation itself, that actually cares about us, that actually cares about Teegan and her well-being,” says Zach.
Deep bonds are often formed between the staff of specialists and the patients and families that they’re responsible for the wellbeing of.
“Being involved in a lifesaving treatment has no words, it’s the most rewarding experience that anyone can have. It’s the reason that we do what we do. To provide excellent care, and to achieve superb outcomes,” says board-certified pediatric hepatologist and director of pediatric gastroenterology, hepatology and liver transplantation with AdventHealth for Children, Regino Gonzalez-Peralta, MD.
“One of the exciting things about liver transplant for children is that their disease is cured after the liver transplant and it won’t come back,” said George V. Mazariegos, M.D., chief of pediatric transplantation at Children’s. “We’re grateful for this opportunity to expand our services and expertise in pediatric liver transplantation to families like Teegan’s in the Florida area. Our extension of expertise will provide the best possible care and make transplant a life-saving treatment for local families and help them achieve a better quality of life.”
Why Care Close to Home Matters
“The pediatric liver transplant program really makes us unique in our area,” says Dr. Gonzalez. “There is a critical need for children across our state to have access to a liver transplant program that is close to home. Prior to this partnership with UPMC, the only option for kids that needed this level of care was to travel to Miami. These are very sick children and if you’ve ever had to travel with an ill child, even a short distance, then you know the challenges it can pose.”
- Provide state-of-the-art care to the region
- World class team close to home to provide individualized and compassionate care
- Bring the experience of one the nation’s best pediatric liver transplant programs to Central Florida
A History of Groundbreaking, Lifesaving Care
Since being founded in 1973, AdventHealth’s Transplant Institute has helped more than 4,000 transplant patients through a commitment to care that has evolved alongside the science and technology of the procedure. Our state-of-the-art facilities and specialist teams of surgeons, hepatologists, specialized nursing teams, dieticians, and transplant coordinators are dedicated to your surgery’s success and to your recovery.
With the goal of expanding care to children in our communities, we’re one of 36 health systems selected to participate in the COIINquality improvement project. This project sets forth a standard of best practices concerning transplant surgeries and the patient care involved with it. By participating in this project we’re positioning ourselves to remain at the forefront of providing the best possible care available.
UPMC Children’s Hospital of Pittsburgh opened the country’s first comprehensive pediatric transplant center back in 1981. Since then, they’ve performed more than 1,700 pediatric liver transplant surgeries with the best pediatric liver transplant outcomes in the US, according to the Scientific Registry of Transplant Recipients (SRTR).
Dedication to Convenient Care
To learn more about the difference AdventHealth for Children and the AdventHealth Transplant Institute can make in your family’s care and your child’s liver transplant, please visit our website or call Call407-303-2474 to speak with a specialist.