Miller syndrome therapy requires a team of specialists, such as pediatricians, oral surgeons, plastic surgeons, otolaryngologists; ear, nose, and throat (ENT) specialists. In addition, ophthalmologists; specialists in diagnosing and treating eye disorders, otologists; who are specialists in diagnosing and treating ear disorders, audiologists; specialists in treating hearing loss, psychologists, and other healthcare professionals.
A craniofacial center has a team of experienced specialists who can coordinate care. The specific symptoms of each individual affected with Miller syndrome are treated.
Miller Syndrome Therapy
Specific treatment often consists of surgeries.
Together, Heather and Logan have had over 55 surgeries to date.
Surgeries are required to correct abnormalities of the jaws, limbs, ears, and eyes. Surgery and/or speech therapy are necessary due to having a cleft palate (opening in the roof of the mouth.) Congenital heart defects and other complications with various organs often require surgical intervention.
Speech Therapy and Hearing Aides
Speech therapy may be of benefit for individuals with speech development delays due to hearing loss and may require the use of a hearing aid.
Heather and Logan both have moderate to severe hearing loss and wear hearing aids full time in one and sometimes both ears. During kindergarten through high school, they each worked closely with a teacher who is a hearing specialist.
Genetic Counseling
Genetic counseling can benefit affected individuals and their families as part of Miller syndrome therapy.
Doctors had only reported three individual cases in medical literature when Heather was born. With so few cases reported, a geneticist informed us there was a zero risk for having a re-occurrence with another pregnancy. The correct answer would have been, “We don’t know.”
Logan was born three years later also having Miller syndrome. As a result, we became the first family ever to have a re-occurrence
Genetic Research
In 2010, we became the first family ever to have our entire genome sequenced. Scientists found an autosomal recessive gene that causes Miller syndrome which results in having a 25% chance of a re-occurrence with each pregnancy.
Knowing the cause of Miller syndrome doesn’t change the treatment, however, Heather, Logan and I now have peace of mind knowing the cause of their challenges.
For more information about Miller syndrome visit the sites below.
NORD National Organization for Rare Diseases
FACES: The National Craniofacial Association
