Overview
Primary pediatric heart tumors are rare growths that form inside or on the heart in children, including newborns and infants. These tumors can be either benign (not cancerous) or malignant (cancerous), though the majority found in children are benign. The most common type in children is called a cardiac rhabdomyoma, followed by fibromas, myxomas, and teratomas. Malignant tumors, such as sarcomas, are much rarer but more serious. The ICD-10 codes C38.0 (malignant) and D15.1 (benign) reflect this important distinction. These tumors can affect the heart in several ways depending on their size and location. They may block blood flow through the heart, interfere with the heart's electrical system causing abnormal rhythms, or press on surrounding structures. Some tumors cause no symptoms at all and are found by accident during an ultrasound. Others can cause serious problems from birth. Symptoms vary widely but can include an irregular heartbeat, difficulty breathing, poor feeding in infants, bluish skin color, and fainting. Treatment depends on the tumor type. Many benign tumors, especially rhabdomyomas linked to a condition called tuberous sclerosis, may shrink on their own over time. Others require surgery, medication, or in rare cases, more intensive cancer treatment. Early detection and care by a specialized heart team greatly improves outcomes for most children.
Also known as:
Key symptoms:
Irregular or abnormally fast heartbeat (arrhythmia)Difficulty breathing or shortness of breathBluish tint to the skin, lips, or fingernails (cyanosis)Poor feeding or difficulty eating in infantsFatigue or unusual tirednessFainting or loss of consciousnessSwelling in the legs, abdomen, or faceHeart murmur detected by a doctorChest pain or discomfortSeizures (especially if linked to tuberous sclerosis)Slow weight gain or failure to thrive in infantsSudden cardiac arrest in severe cases
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
3 eventsFondazione Policlinico Universitario Agostino Gemelli IRCCS
University Hospital, Caen
Jimena del Castillo
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Primary pediatric heart tumor.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Primary pediatric heart tumor at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Primary pediatric heart tumor.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Primary pediatric heart tumor.
Community
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Start the conversation →Latest news about Primary pediatric heart tumor
Disease timeline:
New recruiting trial: Pediatric In-Hospital Cardiac Arrest International Registry (PACHIN)
A new clinical trial is recruiting patients for Primary pediatric heart tumor
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What type of heart tumor does my child have, and is it benign or malignant?,Does my child need treatment right away, or is watchful waiting appropriate?,Should my child be tested for tuberous sclerosis or another genetic condition?,What are the signs that the tumor is growing or causing more problems, and when should I call you or go to the emergency room?,Are there any activity restrictions my child needs to follow?,What does long-term follow-up look like, and how often will my child need heart imaging?,Are there any clinical trials or newer treatments we should consider?
Common questions about Primary pediatric heart tumor
What is Primary pediatric heart tumor?
Primary pediatric heart tumors are rare growths that form inside or on the heart in children, including newborns and infants. These tumors can be either benign (not cancerous) or malignant (cancerous), though the majority found in children are benign. The most common type in children is called a cardiac rhabdomyoma, followed by fibromas, myxomas, and teratomas. Malignant tumors, such as sarcomas, are much rarer but more serious. The ICD-10 codes C38.0 (malignant) and D15.1 (benign) reflect this important distinction. These tumors can affect the heart in several ways depending on their size an
At what age does Primary pediatric heart tumor typically begin?
Typical onset of Primary pediatric heart tumor is neonatal. Age of onset can vary across affected individuals.