Overview
Infant acute respiratory distress syndrome (infant ARDS), also known as neonatal respiratory distress syndrome (RDS) or hyaline membrane disease, is a serious breathing condition that affects newborn babies, especially those born prematurely. In this condition, the tiny air sacs in the lungs (called alveoli) do not work properly because the lungs lack enough of a slippery substance called surfactant. Surfactant normally helps keep the air sacs open so that oxygen can pass into the blood. Without enough surfactant, the air sacs collapse with each breath, making it very hard for the baby to breathe. Babies with this condition breathe very fast, make grunting sounds, and their skin may turn bluish because they are not getting enough oxygen. The chest may look like it is caving in with each breath. Symptoms usually appear within minutes to hours after birth and can get worse over the first two to three days. Treatment has improved dramatically over the past few decades. Doctors can give surfactant directly into the baby's lungs through a breathing tube, which often leads to rapid improvement. Babies may also need help breathing from a machine (mechanical ventilator) or a gentler form of breathing support called CPAP. With modern neonatal intensive care, many babies recover fully, though very premature infants may face longer-term lung challenges.
Also known as:
Key symptoms:
Very fast breathing (more than 60 breaths per minute)Grunting sound with each breathBluish color of the skin, lips, or fingernails (called cyanosis)Nostrils flaring wide open with each breathChest pulling inward or 'caving in' with each breathLow oxygen levels in the bloodDifficulty feeding due to breathing problemsPale or mottled skin colorWeak cryLimpness or poor muscle tone
Multifactorial
Caused by a mix of several genes and environmental factors
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
10 eventsLoma Linda University — NA
University of Texas Southwestern Medical Center — NA
The Children's Hospital of Zhejiang University School of Medicine — PHASE4
Mayo Clinic
Neola Medical Inc — NA
Hackensack Meridian Health — NA
Murdoch Childrens Research Institute — NA
Uludag University — PHASE4
Jiulongpo No.1 People's Hospital — NA
Medical University of Graz — PHASE4
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
3 availableInfasurf
to reduce the risk of respiratory distress syndrome (RDS) in preterm neonates <29 weeks of gestational age at risk for RDS
Curosurf
Treatment (rescue) of respiratory distress syndrome in premature infants.
Survanta intratracheal suspension
Treatment of ("rescue") of premature infants with RDS confirmed by x-ray and requiring mechanical ventilation
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
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to Infant acute respiratory distress syndrome.
Community
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Start the conversation →Latest news about Infant acute respiratory distress syndrome
Disease timeline:
New recruiting trial: Preterm Lung Patient Registry
A new clinical trial is recruiting patients for Infant acute respiratory distress syndrome
New recruiting trial: Clinical Pharmacology of Dexamethasone in Pregnant Women With Preterm Labor
A new clinical trial is recruiting patients for Infant acute respiratory distress syndrome
New recruiting trial: The Impact of PEEP-guided Electrical Impedance Tomography on Oxygenation and Pulmonary Mechanics in Moderate-to-severe ARDS
A new clinical trial is recruiting patients for Infant acute respiratory distress syndrome
New recruiting trial: Spinal Cord Stimulation to Shorten Ventilator Dependence in ARDS Patients
A new clinical trial is recruiting patients for Infant acute respiratory distress syndrome
New recruiting trial: Surfactant for Neonatal Respiratory Distress Syndrome(NRDS) and Neonatal Acute Respiratory Distress Syndrome(NARDS)
A new clinical trial is recruiting patients for Infant acute respiratory distress syndrome
New recruiting trial: Feasibility of Using the Neovent in Low-Resource Settings
A new clinical trial is recruiting patients for Infant acute respiratory distress syndrome
New recruiting trial: Predictive Value of Lung Ultrasound for Respiratory Decompensation in Late Preterm Neonates
A new clinical trial is recruiting patients for Infant acute respiratory distress syndrome
New recruiting trial: Comparison of Continuous Positive Airway Pressure (CPAP) and Non-Invasive Positive Pressure Ventilation (NIPPV) in Preterm Newborns With Respiratory Distress Syndrome.
A new clinical trial is recruiting patients for Infant acute respiratory distress syndrome
New recruiting trial: Effect of Nasal CPAP Versus NIPPV On Diaphragm Electrical Activity (Edi) In VLBW Preterm Infants
A new clinical trial is recruiting patients for Infant acute respiratory distress syndrome
New recruiting trial: 30% or 60% Oxygen at Birth to Improve Neurodevelopmental Outcomes in Very Low Birthweight Infants
A new clinical trial is recruiting patients for Infant acute respiratory distress syndrome
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 baby's RDS, and what does that mean for their recovery?,Will my baby need a breathing machine, and for how long?,What are the chances my baby will develop long-term lung problems like bronchopulmonary dysplasia?,Should my baby be tested for a genetic cause of surfactant deficiency?,What signs should I watch for at home that would mean I need to call for emergency help?,Will my baby need any special follow-up for developmental delays?,Are there any vaccines or medications my baby will need to protect their lungs after going home?
Common questions about Infant acute respiratory distress syndrome
What is Infant acute respiratory distress syndrome?
Infant acute respiratory distress syndrome (infant ARDS), also known as neonatal respiratory distress syndrome (RDS) or hyaline membrane disease, is a serious breathing condition that affects newborn babies, especially those born prematurely. In this condition, the tiny air sacs in the lungs (called alveoli) do not work properly because the lungs lack enough of a slippery substance called surfactant. Surfactant normally helps keep the air sacs open so that oxygen can pass into the blood. Without enough surfactant, the air sacs collapse with each breath, making it very hard for the baby to brea
How is Infant acute respiratory distress syndrome inherited?
Infant acute respiratory distress syndrome follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Infant acute respiratory distress syndrome typically begin?
Typical onset of Infant acute respiratory distress syndrome is neonatal. Age of onset can vary across affected individuals.
Are there clinical trials for Infant acute respiratory distress syndrome?
Yes — 12 recruiting clinical trials are currently listed for Infant acute respiratory distress syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Infant acute respiratory distress syndrome?
25 specialists and care centers treating Infant acute respiratory distress syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Infant acute respiratory distress syndrome?
3 patient support programs are currently tracked on UniteRare for Infant acute respiratory distress syndrome. See the treatments and support programs sections for copay assistance, eligibility, and contact details.