Isotretinoin-like syndrome

Isotretinoin-like syndrome is a very rare condition that a baby is born with, meaning it is present from birth (congenital). It is also sometimes called 'retinoic acid embryopathy-like syndrome' because the pattern of birth differences looks very similar to what can happen when a pregnant person takes the acne medication isotretinoin (brand name Accutane) during pregnancy — even when no such medication was taken. The syndrome causes a recognizable pattern of physical differences that affect the face, ears, heart, and brain. Babies born with this condition often have small or unusually shaped ears, heart defects, a small head (microcephaly), and differences in how the brain develops. Some children also have intellectual disability and learning challenges. The face may look different in specific ways, such as a small jaw or widely spaced eyes. There is currently no cure for isotretinoin-like syndrome. Treatment focuses on managing each individual symptom or health problem. This means a child may need heart surgery, hearing support, developmental therapies, and educational support depending on which parts of the body are affected. A team of different specialists usually works together to give the best care.

Bring these to your next appointment

• Q1.What specific tests should my child have to understand all the ways this syndrome is affecting their body?,Should we do genetic testing, and what type would be most helpful for our family?,What specialists does my child need to see, and how often?,What early therapies or interventions would give my child the best chance of development?,Are there any heart problems we need to watch for or treat right away?,What should I watch for at home that would mean my child needs emergency care?,Are there any patient support groups or research studies we could connect with?

Common questions about Isotretinoin-like syndrome

Related conditions

Other rare diseases commonly researched alongside Isotretinoin-like syndrome.

• CHARGE syndrome→