Neuroendocrine Cell Hyperplasia of Infancy (NEHI)
What is Neuroendocrine Cell Hyperplasia of Infancy (NEHI)?
- NEHI is an Interstitial Lung Disease that causes fast breathing in babies
- Symptoms usually appear in otherwise healthy babies in the first few months to the first year of life
- It is a very rare disorder
What are symptoms of NEHI?
- Fast breathing (called tachypnea)
- Sinking in of the areas below the ribs, between the ribs, and in the neck with breathing (called retractions)
- Abnormally low amount of oxygen in the blood (called low oxygen saturations)
- Crackle sounds in the lungs that are heard with a stethoscope
- Problems growing and gaining weight
- Reflux (food or drink travels from stomach up the tube to the throat or mouth)
- Most children with NEHI have the respiratory symptoms all the time, even when no infection is present
How is NEHI diagnosed?
- Visits with a lung doctor (called a pulmonologist)
- Testing for NEHI may include one or all of the following:
- High resolution chest CT scan (x-ray that takes special pictures of the lungs)
- Infant pulmonary function tests (measures the air moving in and out of the lungs)
- Lung biopsy (surgically removing a small piece of lung tissue)
What is the cause of NEHI?
The cause of NEHI is unknown
For reasons that are unclear, children with NEHI have more specialized cells called neuroendocrine cells in their small air tubes (called bronchioles)
NEHI may occur in more than one member of a family, suggesting that genetics may play a role
What is the treatment for NEHI?
Additional oxygen. While not every child needs it, some need it through school age
Additional nutrition to help gain weight and grow if needed
Flu shot every year to lower the chance of getting infections
Steroid therapy has not been very helpful in most cases
My child has NEHI…now what?
Children often have symptoms for several years that slowly get better over time
No deaths or need for lung transplantation have been reported
Long term results are not known
Infections in the lungs may increase symptoms
Make a care notebook of important health information
Contact Us
For questions or more information please contact Lisa R. Young, MD, Director of the Pediatric Rare Lung Diseases Program at Cincinnati Children's, 513-636-6771.
Rev. 12/09
