Overview
Generalized arterial calcification of infancy, also known as GACI or idiopathic infantile arterial calcification, is a very rare and serious condition that affects the blood vessels of babies. In this disease, calcium builds up inside the walls of arteries — the blood vessels that carry blood from the heart to the rest of the body. This hardening and narrowing of the arteries makes it very hard for the heart to pump blood properly, which can lead to dangerously high blood pressure and heart failure, often starting before birth or in the first few months of life. The most common symptoms include high blood pressure that is very difficult to control, heart failure, and poor feeding or breathing problems in newborns. Calcium deposits can affect arteries throughout the entire body, including those supplying the heart, kidneys, and other vital organs. Some babies also develop low phosphate levels in the blood, which can affect bone development. Treatment focuses on managing symptoms, especially controlling blood pressure and supporting heart function. The drug bisphosphonate (most often etidronate) has been used to slow or reduce calcium buildup in the arteries and has improved survival in some babies. Without treatment, this condition is often life-threatening in the first year of life, but with early and aggressive care, some children survive and improve over time.
Also known as:
Key symptoms:
Very high blood pressure in a newborn or infantHeart failure or difficulty pumping bloodPoor feeding and failure to gain weightBreathing difficultiesCalcium deposits in artery walls seen on imagingSwelling of the body due to fluid buildupPale or bluish skin colorLow levels of phosphate in the bloodSoft or abnormally shaped bones (rickets-like changes)Hearing loss in some casesJoint pain or stiffness in older surviving childrenKidney problems due to narrowed kidney arteries
Clinical phenotype terms (50)— hover any for plain English
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Generalized arterial calcification of infancy.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Generalized arterial calcification of infancy at this time.
New trials open frequently. Follow this disease to get notified.
Rare Disease Specialist
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 Generalized arterial calcification of infancy.
Community
No community posts yet. Be the first to share your experience with Generalized arterial calcification of infancy.
Start the conversation →Latest news about Generalized arterial calcification of infancy
No recent news articles for Generalized arterial calcification of infancy.
Follow this condition to be notified when news becomes available.
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.Which gene caused my child's GACI, and what does that mean for their specific outlook?,Should other family members be tested as carriers?,What is the plan for monitoring and treating high blood pressure at home?,How will we know if the calcium deposits in the arteries are improving or getting worse?,Are there any clinical trials or new treatments we should consider?,What specialists should be part of my child's care team, and how often should we see them?,What emergency signs should prompt us to go to the hospital immediately?
Common questions about Generalized arterial calcification of infancy
What is Generalized arterial calcification of infancy?
Generalized arterial calcification of infancy, also known as GACI or idiopathic infantile arterial calcification, is a very rare and serious condition that affects the blood vessels of babies. In this disease, calcium builds up inside the walls of arteries — the blood vessels that carry blood from the heart to the rest of the body. This hardening and narrowing of the arteries makes it very hard for the heart to pump blood properly, which can lead to dangerously high blood pressure and heart failure, often starting before birth or in the first few months of life. The most common symptoms inclu
How is Generalized arterial calcification of infancy inherited?
Generalized arterial calcification of infancy follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Generalized arterial calcification of infancy typically begin?
Typical onset of Generalized arterial calcification of infancy is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Generalized arterial calcification of infancy?
4 specialists and care centers treating Generalized arterial calcification of infancy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.