New advances and procedures concerning Apert Syndrome are constantly being developed. Be an advocate for your child!

APERT SYNDROME

What is Apert Syndrome?

Apert Syndrome is a condition involving distortions of the head and face and webbing of the hands and feet. Characteristics include:

  • Skull - short from back to front, wide on the sides, and overly tall (craniosynostosis)

  • Eyes - slightly side-spaced, bulging, the eyelids tilt downward abnormally at the sides

  • Face - the mid-face has a sunken-in appearance, the upper jaw slopes backward, lower teeth project in front of the upper teeth

  • Hands and feet - webbing and/or fusion including finger bones, toe bones, and joints of fingers and toes

Why did this happen?

There is no link between anything the mother did or did not do while she was pregnant and the occurrence of Apert Syndrome. Doctors believe Apert Syndrome occurs when a gene mutates early in the pregnancy.

 

Will this happen to children I have in the future?

The chances of having another child with Apert Syndrome is almost non-existent if both parents are unaffected. If one parent has Apert Syndrome, there is a 50% chance that his/her children will have Apert Syndrome.


What kinds of problems could my child have?

In addition to the physical characteristics common to Apert Syndrome, your child may have the following problems:

  • Cleft palate - about 30% of children with Apert Syndrome are affected

  • Slower learning rates and abilities - about 50% of children with Apert Syndrome are affected; however, as the children grow older, they often catch up with others

  • Vision problems caused by imbalance of the eye muscles

  • Recurrent ear infections which can cause hearing loss

  • Noisy breathing - the smaller nose and airway passages may make breathing difficult

  • Hyperactive sweat glands may cause your child to sweat a lot, especially while sleeping

  • Problems with acne are more likely, especially during puberty

Will my child need surgery?

Depending on the severity of Apert Syndrome, your child may have some or all of the following surgeries:

  • Total skull reshaping to correct the tower skull problems at three to four months of age

  • Frontal-orbital advancement to increase space within the skull and the size of both orbits (the part of the skull with holds the eyeball) at three to four months of age

  • Mid-facial advancement - usually prior to starting school

  • Facial bi-partition to widen the upper jaw, derotate the orbits, and to narrow the upper face

  • Osteotomy (cutting through the bone of the upper and lower jaw to correct further problems usually during the teen years

  • Rhinoplasty - plastic surgery of the nose

  • Genioplasty - plastic surgery of the chin or cheek

  • Eyelid surgery to correct the abnormal downward tilt

  • Separation of the fingers and/or toes

How do I get help for my child?

Your child should be treated by a qualified craniofacial medical team at a craniofacial center. Currently, FACES has information on many of these teams. This is by no means a comprehensive list of all the craniofacial teams.
Please Contact Us for details.

 

Am I alone?

No! There are many families and organizations who will be glad to talk with you and help you with information and support. Don't forget books, videos, and websites, especially Facebook groups. The listing below will get you started.

FACES: The National Craniofacial Association

We provide financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need (Apply Here). Resources include newsletters, information about craniofacial conditions, and networking opportunities. Contact Us for more information.

Office of Rare Diseases

The Genetic and Rare Diseases Information Center

Excellent web site for finding information on a variety of craniofacial disorders, particularly very rare ones. Information specialists are available to answer your questions. Telephone operation is Monday - Friday, 12 pm to 6 pm Eastern Time. Email or fax requests for information will be answered within 5-10 working days. U.S. Mail requests will be answered within 5-10 working days. NOTE: The center does not give medical advice, provide treatment, or diagnose illness.
Phone: (888) 205-2311
Website: rarediseases.info.nih.gov/diseases/5833/apert-syndrome

US National Library of Medicine

Your guide to understanding genetic conditions

Website: ghr.nlm.nih.gov/condition/apert-syndrome


Apert International, Inc.
Don & Cathie Sears
This web site on Apert Syndrome will give you directions to the on-line discussion network that is an excellent support resource!!. The Annual Apert Conference is usually held each year in Myrtle Beach, South Carolina at the Crown Reef Resort. It is open to families who have been affected by Apert Syndrome or any other similar craniofacial difference. Registration is free, but families pay for travel costs, lodging, and food.
Phone: (803) 732-2372

Website: www.apert.org

Apert Owl
Apert OWL is committed to providing help to families, friends and medical professionals seeking information about Apert syndrome. More importantly, we want others to know that while a journey with Apert syndrome will most definitely be a challenging one, it can be a beautiful one as well.
Website: www.apertowl.org

National Health Law Program
Provides extensive information on health care law affecting families with children who have special health care needs.
Phone: (202) 289-7661
Website: www.healthlaw.org

Worldwide Apert Syndrome Map
A map showing where people with Apert Syndrome live. If you would like to add yourself, please do!
Website: https://www.diseasemaps.org/apert-syndrome/

Additional Resources

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Suggested Reading

Children with Facial Difference:

A Parent's Guide


Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.

Maggie

Written by Steve Doherty, the father of a child named Maggie, who was born  with Apert Syndrome. Maggie takes the reader on the adventure of having a child born with Apert Syndrome with all of its ups, downs, trials, and triumphs. A true love story.

Click here to read the book online

Babyface:

A Story of Heart and Bones,

By Jeanne McDermott, the mom of a son born with Apert Syndrome. This book highlights the first two years of Nate's life, and expresses the thoughts and feelings that are a part of the journey of having a child who is born with a rare disorder. This is a book you will want to share with your friends and family members. The book can be found at Amazon.com.

FACES: The National Craniofacial Association

FACES: The National Craniofacial Association

P.O. Box 11082 | Chattanooga, TN 37401 | USA

(800) 332-2373

FACES is a member organization of America's Best Charities
FACES is a member organization of GuideStar Exchange
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Faces: The National Craniofacial Association is a 501©(3) nonprofit organization incorporated under the laws of the State of Tennessee.

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