Resources for Liver Transplant Patients and Families

A liver transplant affects the whole family, not just your child. That's why Children's Hospital Colorado offers a wide range of resources to support your family's well-being throughout the transplant journey.

Liver transplant child and family support services

Every family’s needs are different. We offer a variety of services so you can find the support that fits your family's needs, including:

• Welcome Program, which helps families find their way around the hospital and campus, especially during their first visit
• Child life specialists, who provide age-appropriate activities to help your child understand and cope with their condition
• Family health navigators, who coordinate your child's care, connect you with resources and help you get the support you need
• Family Resource Center, which provides comfortable shared spaces and thoughtful amenities for meals, laundry and relaxation
• Interpreter services, which are available 24/7 to help your family communicate clearly with your care team
• Medical Dog Program, in which specially trained dogs comfort children, reduce stress and encourage movement during recovery
• Patient and family library, which gives you access to the internet and educational resources
• Transplant dietitians, who help you and your child build healthy eating habits before and after transplant surgery

Liver transplant emotional and mental health resources

Emotional support is an important part of transplant care. Our team is here to help you cope, heal and feel supported with:

• Transplant psychologists, who provide therapy, coping strategies and mental health support for patients and families
• Clinical social workers, who offer emotional support, counseling and help with housing and financial needs
• Parent support groups, where families can share experiences and encourage one another
• Chaplain services and an on-site chapel, which are available 24/7 to provide spiritual support for people of all faiths and beliefs

Housing for families of liver transplant patients

We know it's important for families to stay close throughout the transplant journey. Your transplant team can help connect you with nearby housing options, such as:

• Family Resource Center: Parents and guardians may reserve a private respite room within the hospital on a first-come, first-served basis. Each room includes a bed, flat-screen TV and secure storage for personal items.
• Brent's Place: Families may qualify for a private apartment at Brent's Place, near the Anschutz Medical Campus. This housing is specially designed to provide a safe, healthy environment for families of immunocompromised children, including liver transplant patients. They also offer nourishing meals, family activities and personalized support.
• Ronald McDonald House: Ronald McDonald House provides a comfortable place for families to stay close to the hospital. Shared kitchens, laundry facilities, play spaces and lounges help make longer stays easier. See how Ronald McDonald House supported Ava’s family.

Costs, insurance and financial assistance for liver transplant patients

Understanding the costs of care is one part of preparing for your child’s liver transplant. Our team is here to help you explore available resources and support. During your child's two-day transplant evaluation, you'll meet with a transplant financial coordinator who will:

• Review your insurance coverage for your child's liver transplant, including prescription benefits
• Help you understand out-of-pocket costs, such as deductibles and copays
• Explain your insurance coverage for travel and lodging
• Answer your questions about transplant costs, insurance coverage and billing

Your financial coordinator can also help you find financial assistance programs, like the Children's Organ Transplant Association (COTA). COTA helps families raise funds for transplant-related expenses, including travel and lodging.

Additional liver transplant resources for families

Sometimes, the best support comes from people who have walked a similar path. Organizations that offer education, support and resources for families affected by liver disease include:

• Alagille Syndrome Alliance: Supports families affected by Alagille syndrome through educational resources, family connections, support programs and financial assistance for eligible families
• American Liver Foundation: Offers online support groups, caregiver resources, educational materials and a peer support program for people affected by liver disease
• BARE (Biliary Atresia Research & Education): Supports families affected by biliary atresia through an online community, caregiver support groups, webinars and educational resources
• PFIC Network: Helps families understand and manage progressive familial intrahepatic cholestasis (PFIC) with support groups, educational resources, webinars and children's books

Meet some of our liver transplant patients and families

• Emma’s story
• Gracie’s story
• Seth’s story
• Amara’s story

Emma’s story Emma’s story

Emma waited more than a year for a liver transplant in Texas. Her family listed her at Children's Colorado to expand their search. Less than a month later, she received the liver she had been waiting for.

See how Emma found her donor

Gracie’s story Gracie’s story

Gracie’s family always knew she'd need a new heart. When her liver also began to fail, her Children’s Colorado care team performed a rare dual heart-liver transplant. Today, she's back to doing the things she loves.

Learn about Gracie’s lifesaving transplant

Seth’s story Seth’s story

Seth's fourth liver transplant was far from routine. His complex medical needs raised difficult questions about whether another transplant would succeed. More than 50 experts across 15 specialties at Children’s Colorado came together to make it possible.

Follow Seth’s transplant journey

Amara’s story Amara’s story

Amara was just 16 months old when she received a liver transplant. When she needed a second liver days later, her family made a promise to help others facing biliary atresia — and they've kept it.

Meet Amara and her family