Overview
Cystic hamartoma of lung and kidney is an extremely rare condition in which abnormal, non-cancerous growths called hamartomas develop in both the lungs and the kidneys. These hamartomas are made up of a disorganized mix of tissues that are normally found in these organs, but they grow in a cyst-like (fluid-filled sac) pattern. The condition is typically identified in newborns or very young infants and may be detected before birth on prenatal ultrasound. Affected babies may have breathing difficulties due to the lung cysts and kidney problems due to the renal cysts. The lung involvement can range from mild to severe, and in some cases the cysts can be large enough to compress surrounding lung tissue, leading to respiratory distress. The kidney cysts can impair normal kidney function. Because this condition is so rare, with only a handful of cases reported in the medical literature, there is no established standard treatment. Management is supportive and depends on the severity of symptoms. Surgical removal of problematic cysts may be considered, and respiratory support may be needed for infants with significant lung involvement. Kidney function is monitored closely. The long-term outlook varies depending on how severely the lungs and kidneys are affected.
Also known as:
Key symptoms:
Cysts in the lungsCysts in the kidneysBreathing difficulties in newbornsRapid breathingLow oxygen levelsEnlarged kidneysReduced kidney functionAbdominal swellingFailure to thrive or poor weight gainRespiratory distress at birth
Clinical phenotype terms (5)— hover any for plain English
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Cystic hamartoma of lung and kidney.
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Specialists
View all specialists →No specialists are currently listed for Cystic hamartoma of lung and kidney.
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 Cystic hamartoma of lung and kidney.
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Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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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.How severe are the cysts in my child's lungs and kidneys?,Will my child need surgery to remove any of the cysts?,What kind of respiratory support might be needed?,How will kidney function be monitored over time?,Is genetic testing recommended to rule out other conditions?,What is the expected long-term outlook for my child?,Are there any specialists or centers with experience treating this condition?
Common questions about Cystic hamartoma of lung and kidney
What is Cystic hamartoma of lung and kidney?
Cystic hamartoma of lung and kidney is an extremely rare condition in which abnormal, non-cancerous growths called hamartomas develop in both the lungs and the kidneys. These hamartomas are made up of a disorganized mix of tissues that are normally found in these organs, but they grow in a cyst-like (fluid-filled sac) pattern. The condition is typically identified in newborns or very young infants and may be detected before birth on prenatal ultrasound. Affected babies may have breathing difficulties due to the lung cysts and kidney problems due to the renal cysts. The lung involvement can ran
At what age does Cystic hamartoma of lung and kidney typically begin?
Typical onset of Cystic hamartoma of lung and kidney is neonatal. Age of onset can vary across affected individuals.