🫶🟡 Liver Transplantation in Children: A Parent-Friendly Guide

✅ A liver transplant means replacing a child’s sick liver with a healthy liver (or part of a liver) from a donor.
It is done when the liver can no longer do its job safely, or when complications become too risky.
Many children go back to school, sports, and a full life after transplant—with lifelong follow-up and medications.

1) 🧾 Quick “At-a-glance” box (top of page)

✅ Topic: Pediatric Liver Transplantation
Common names: Liver transplant, pediatric transplant

Plain-language summary (2–3 lines):
Liver transplant is a life-saving surgery for children with severe liver disease. The transplant team carefully evaluates your child, lists them for transplant when needed, and supports your family before and after surgery. After transplant, children take medications to prevent rejection and need regular monitoring.

Who it affects (typical ages):
All ages—from infants to teens—depending on the liver condition.

✅ What parents should do today:

• Understand why transplant is being considered
• Ask about your child’s current liver function and risks
• Keep all appointments, labs, and medication routines
• Prepare for the “waiting period” emotionally and practically

⚠️ Red flags that need urgent/ER care (before or after transplant):

• Vomiting blood or black stools
• Severe belly swelling or severe abdominal pain
• Confusion, extreme sleepiness, behavior change
• Fever (especially after transplant)

🟡 When to call the transplant team/clinic:

• New jaundice, itching, fatigue
• Poor intake or vomiting
• Missed immunosuppression doses (after transplant)
• Any fever after transplant

2) 🧠 What it is (plain language)

The liver does many vital jobs:

• clears toxins
• makes proteins that help blood clot
• produces bile to digest fat
• stores energy
• supports immune function

A transplant is considered when the liver:

• is failing
• is severely scarred (cirrhosis) with complications
• has a condition where transplant is the best long-term solution

What part of the body is involved? (small diagram required)

Common myths vs facts

• Myth: “Transplant means the child is near death immediately.”
  Fact: Many transplants are planned before life-threatening emergencies to improve safety.
• Myth: “After transplant, life is always normal with no restrictions.”
  Fact: Many children live fully, but follow-up and immunosuppression are lifelong.
• Myth: “A transplant cures everything forever.”
  Fact: It treats liver failure, but ongoing care is needed to prevent rejection and infection.

3) 🧩 Why it happens (reasons for transplant)

Common reasons for pediatric liver transplant

• biliary atresia (most common in many centers)
• genetic/metabolic liver diseases
• autoimmune hepatitis not controlled or with advanced scarring
• PFIC and other cholestatic disorders
• acute liver failure (sudden severe liver injury)
• certain tumors (selected cases)

What triggers transplant evaluation

• worsening labs (clotting, bilirubin, albumin)
• poor growth and nutrition despite support
• complications of portal hypertension
• repeated serious infections of bile ducts
• poor quality of life due to severe symptoms

4) 👀 What parents might notice (symptoms)

Signs of worsening liver disease

• jaundice
• severe itching
• tiredness and poor appetite
• poor growth
• swollen belly (fluid)
• easy bruising or nosebleeds

Signs of portal hypertension

• enlarged spleen
• vomiting blood or black stools (varices—emergency)

Symptom trackers (what to write down)

• weight and appetite
• belly size
• stool color/bleeding
• energy level
• itching severity

5) 🏠 Home care and what helps (step-by-step)

✅ Home care before transplant focuses on safety, nutrition, and readiness.
After transplant, home care focuses on medication adherence and infection awareness.

Before transplant (first 24–48 hours after listing or referral)

✅ Do this now:

• Keep a folder with:
  • diagnosis summary
  • medication list
  • recent labs and imaging
  • emergency contacts
• Review the “call the team” rules
• Prepare practical supports:
  • childcare for siblings
  • transportation plan
  • time-off work planning

After transplant (daily routine)

✅ Do this now:

• Immunosuppression medicines must be taken on time every day
• Keep a thermometer at home
• Wash hands and reduce sick contacts during early recovery
• Attend all lab appointments (very frequent early on)

6) ⛔ What NOT to do (common mistakes)

• Don’t skip or delay immunosuppression doses.
• Don’t give new supplements or herbs without approval.
• Don’t ignore fever after transplant.
• Don’t delay care for vomiting blood or black stools.

7) 🚦 When to worry: triage guidance

🔴 Call 911 / Emergency now

• vomiting blood
• black stools with weakness/dizziness
• severe breathing difficulty
• severe confusion or unresponsiveness

Example: “My child vomited blood.”

🟠 Same-day urgent visit

• fever after transplant
• worsening belly pain
• new jaundice or very dark urine
• vomiting with poor intake
• missed immunosuppression dose with symptoms

🟡 Book a routine appointment

• mild medication side effects
• questions about school, sports, vaccines, travel
• mild itching or fatigue in stable child

🟢 Watch at home

• stable child with normal energy and planned labs, no red flags

8) 🩺 How doctors evaluate for transplant (what to expect)

What the team will assess

• liver disease severity and complications
• nutrition and growth
• heart and lung health
• infection screening
• psychosocial support and medication adherence readiness

Common tests

• blood tests (liver function, clotting, kidney function)
• imaging (ultrasound, CT/MRI depending on situation)
• sometimes endoscopy for varices
• vaccine review and updates

What tests are usually not needed

• repeated invasive tests unless management changes

9) 🧰 Treatment options (before, during, after transplant)

✅ Transplant is one part of a larger care plan.

Before transplant

• nutritional support (often high-calorie and vitamin supplementation)
• medicines for itching or bile flow in cholestasis
• management of portal hypertension complications
• infection prevention strategies

Surgery (hospital care)

• transplant operation (whole or partial liver)
• ICU monitoring afterward
• pain control and gradual feeding restart

After transplant (long-term)

• immunosuppression medications
• infection monitoring
• routine labs and clinic follow-up
• long-term healthy lifestyle and vaccine planning

Medication/treatment notes (parent-friendly)

• Immunosuppression: prevents rejection; must be taken daily
• Common side effects: infection risk, high blood pressure, blood sugar changes (depends on medicine)
• Serious side effects (rare): severe infection, rejection episodes
• When to stop and seek help: fever, severe illness, missed doses, new jaundice

10) ⏳ Expected course & prognosis

Typical timeline (general)

• Hospital stay: varies, often a few weeks depending on complexity
• Frequent labs early (often weekly or more)
• Gradual return to school over weeks to months (team-guided)

What “getting better” looks like

• good energy and appetite
• improving labs
• stable weight gain
• fewer hospital visits over time

What “getting worse” looks like

• fever
• jaundice returning
• belly pain
• vomiting or poor intake
• lab abnormalities suggesting rejection or infection

11) ⚠️ Complications (brief but clear)

Common (manageable)

• medication side effects
• infections (especially early)
• mild rejection episodes treated quickly

Serious complications

• severe rejection
• vascular or bile duct complications (early post-op)
• severe infection

12) 🛡️ Prevention and reducing future problems

• never miss immunosuppression doses
• hand hygiene and infection awareness
• attend all labs and clinic visits
• healthy nutrition and physical activity
• avoid smoking/vaping exposure
• avoid alcohol in adolescence/adulthood

13) 🌟 Special situations

Infants

Feeding and growth support is central.

Teens

Adherence is critical—build routines, reminders, and supports.

Kids with chronic conditions

Coordination with specialists for kidney, diabetes, or other issues.

Neurodevelopmental differences/autism

Caregiver-administered meds and clear routines.

Travel considerations

Travel is possible later, but:

• carry medication supply
• carry a medical summary
• know how to access urgent care
• avoid travel soon after transplant unless team approves

School/daycare notes

• return plan with transplant team
• hygiene emphasis
• accommodations for appointments and fatigue

14) 📅 Follow-up plan

• early: frequent labs and clinic visits
• later: spaced follow-ups but lifelong monitoring
• urgent contact plan for fever, jaundice, vomiting, missed doses

15) ❓ Parent FAQs

“Is it contagious?”

No.

“Can my child eat ___?”

Usually yes, with healthy balanced nutrition. Food safety is important after transplant.

“Can they bathe/swim/exercise?”

Yes, with timing guidance. Swimming is usually allowed after incision healing and team approval.

“Will they outgrow it?”

Transplant requires lifelong follow-up; most children do very well long-term.

“When can we stop treatment?”

Immunosuppression is lifelong (sometimes doses reduce over time). Never stop without transplant team direction.

16) 🧾 Printable tools (high-value add-ons)

🧾 Printable: Liver Transplant One-Page Action Plan

Daily (after transplant):

• Take immunosuppression on time
• Check temperature if unwell
• Track appetite and energy

Call transplant team if:

• fever
• new jaundice
• vomiting or poor intake
• missed medication dose

Urgent/ER if:

• vomiting blood
• black stools
• severe weakness/fainting

🧾 Printable: Medication Schedule Box

• Immunosuppression #1: ______ Dose: ______ Time: ______
• Immunosuppression #2: ______ Dose: ______ Time: ______
• Other meds: ________________________________

🧾 Printable: Symptom Diary / Tracker

Date: ______

• Temp: ______
• Appetite: good/ok/poor
• Energy: good/ok/poor
• Jaundice: none/mild/moderate
• Notes: _______________________

🧾 Printable: “Red Flags” Fridge Sheet

⚠️ Urgent: vomiting blood, black stools, severe weakness, confusion, fever after transplant.

🧾 Printable: School/Daycare Instructions Page

• Good hand hygiene
• Flexible appointments
• Allow water bottle and bathroom access
• Contact parent if fever or child appears unwell

17) 📚 Credible sources + last updated date

Trusted references:

• Pediatric transplant center education resources
• Children’s hospital liver transplant family guides
• National transplant organizations (pediatric sections)

Last reviewed/updated on: 2025-12-30
Local guidance may differ by transplant center.

🧡 Safety disclaimer

This guide supports—not replaces—medical care. If you are worried about your child, trust your instincts and seek urgent medical assessment.

This guide was fully developed & reviewed by Dr. Mohammad Hussein, MD, FRCPC ROYAL COLLEGE–CERTIFIED PEDIATRICIAN & PEDIATRIC GASTROENTEROLOGIST Board-certified pediatrician and pediatric gastroenterologist (Royal College of Physicians and Surgeons of Canada) with expertise in inflammatory bowel disease, eosinophilic gastrointestinal disorders, motility and functional testing, and complex nutrition across diverse international practice settings.

To book an online assessment Email Dr. Hussein’s Assistant Elizabeth Gray at: Elizabeth.Gray@pedsgimind.ca
In the email subject, please write: New Assessment Appointment with Dr. Hussein

Important: This appointment is completely online as Dr. Hussein is currently working overseas. This service is not covered by OHIP