Overview
Fetal encasement syndrome is an extremely rare condition that is present at birth. In this syndrome, the baby is born with skin that is abnormally tight, thick, or rigid, giving the appearance that the body is encased or wrapped in a restrictive layer. This condition can severely limit the movement of the limbs and joints, and it may also affect the face and other parts of the body. The tight skin can restrict normal growth and development of the underlying tissues, including muscles and bones. Babies born with this condition often have joint contractures, meaning their joints are fixed in a bent or straight position and cannot move freely. Facial features may also be affected, with a mask-like appearance due to the tightness of the skin over the face. Breathing difficulties can occur if the chest wall is restricted. Because this condition is so rare, there is very limited information about its causes and treatment options. Management is primarily supportive and focuses on addressing the specific symptoms each child experiences. A team of specialists is usually needed to provide the best possible care. The long-term outlook depends on the severity of the condition and which body systems are affected.
Key symptoms:
Extremely tight or rigid skin at birthLimited movement of arms and legsJoint contractures (joints stuck in one position)Mask-like facial appearanceDifficulty breathingRestricted chest wall movementDifficulty feedingSwelling of the skinAbnormal skin texture or appearanceRestricted growthLimited facial expressionsDifficulty opening the mouth fully
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Fetal encasement syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Fetal encasement syndrome at this time.
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Specialists
View all specialists →No specialists are currently listed for Fetal encasement syndrome.
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 Fetal encasement syndrome.
Community
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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.How severe is my child's condition, and which parts of the body are most affected?,What is the expected outlook for my child based on their specific symptoms?,What therapies and treatments should we start right away?,Are there any genetic tests that could help us understand the cause?,What emergency signs should we watch for at home?,Are there any other families or support groups dealing with this condition?,Should we consider genetic counseling for future pregnancies?
Common questions about Fetal encasement syndrome
What is Fetal encasement syndrome?
Fetal encasement syndrome is an extremely rare condition that is present at birth. In this syndrome, the baby is born with skin that is abnormally tight, thick, or rigid, giving the appearance that the body is encased or wrapped in a restrictive layer. This condition can severely limit the movement of the limbs and joints, and it may also affect the face and other parts of the body. The tight skin can restrict normal growth and development of the underlying tissues, including muscles and bones. Babies born with this condition often have joint contractures, meaning their joints are fixed in a b
How is Fetal encasement syndrome inherited?
Fetal encasement syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Fetal encasement syndrome typically begin?
Typical onset of Fetal encasement syndrome is neonatal. Age of onset can vary across affected individuals.