AOSupport

Uniting Families Affected by Adams-Oliver Syndrome.

Suggested Care

Having a child born with Adams-Oliver syndrome can be a scary thing without knowing what steps to take. Here are some suggestions from other parents who have a child with Adams-Oliver syndrome.

Precautions to take:

  • Skull x-ray
  • Heart ECHO
  • Brain MRI or CT
  • Kidney ECHO
  • Regular eye exams*

Doctors to see:

  • Geneticist
  • Pediatric Cardiologist
  • Pediatric Dermatologist 
  • Optometrist

Things to watch for:

  • Pulmonary Hypertension**
  • Kidney Complications***

*Glaucoma is rare and most cases have been reported in AOS patients who also have cutis marmorata telangiectasia congenita (CMTC).


**Signs of pulmonary hypertension may include difficulty breathing, fluid retention, blueish colored nails or lips, problems with weight gain, difficulty eating, shortness of breath, fainting, or light-headedness.

***Signs of kidney complications may include regular urinary tract infections, bladder infections, high blood pressure, blood in urine, fatigue, loss of appetite, or trouble breathing.

If you would like to add to this list, please contact us.