Stony Brook Cleft Palate-Craniofacial Center

Helping Children To Smile Is Our Mission

The Stony Brook Cleft Palate-Craniofacial Center provides specialized multidisciplinary care for children of all ages born with cleft lip/palate and other defects affecting the head (cranium) and/or face. Our patients are cared for at Stony Brook Children's Hospital, which offers the most advanced pediatric specialty care in our region and the only one of its kind in Suffolk County. Hands on care multidisciplinary care, right here on Long Island.

Want To Learn More?

• Contact Us
• About Us
• Meet Our Team

• Conditions We Treat
• What Is a Cleft?
• What Is Craniofacial Surgery?

• Patient Resources
• Make A Donation
• Events

Contact Us

If you would like to schedule an appointment with the Cleft Palate-Craniofacial Team, or have any questions at all, please do not hesitate to call the Stony Brook Cleft Palate-Craniofacial Center at (631) 444-7342.

Download a PDF contact list for our Cleft Palate-Craniofacial Team.

To learn more about our Cleft Palate-Craniofacial Team scroll down or click here.

About Us

The birth of a child with a craniofacial abnormality can be a difficult time for family, friends and relatives. Helping the family cope and plan for the future is the goal of Stony Brook Medicine's Cleft Lip/Palate-Craniofacial Team. Organized in 1984, the team has been a resource for care and support to the families of several hundred children from Nassau and Suffolk counties.

Worldwide, one child in approximately 700 is born with a facial cleft. Although most children come to us as newborns, we provide care for children of all ages born with cleft lip/palate and other craniofacial defects. These children and their families are best cared for by a multidisciplinary team of healthcare professionals to assure that the physical and emotional needs of the child and family are met.

The American Cleft Palate-Craniofacial Association recommends that each child be followed by a cleft palate/craniofacial team. The team approach is ideally suited for the special needs of children born with cleft lip/palate and other craniofacial abnormalities. Team visits are arranged so that our specialists can evaluate each child in an open, friendly environment and respond to the questions and concerns of each family. After the visit, the team coordinator works with the family to assure that the care plan is completed. Working as a team with the child's parents and pediatrician, the Cleft Lip/Palate-Craniofacial Team integrates care with the emotional and educational needs of the child and family as needed to assure the best possible repair of the anomaly as well as normal growth and development. Stony Brook is the only ACPA-approved team in Suffolk County.

Learn more about cleft palate from our experts, and what distinguishes the Stony Brook Cleft Palate-Craniofacial Center at Stony Brook. Our multidisciplinary team specialist areas include:

Cleft Palate-Craniofacial Team

Our team approach to care and repair provides each patient with a comprehensive surgical plan tailored to their specific needs for every step of their developmental journey.

Audiologist
Jamie Cluna, AuD

Department of Health
Robert Ackerman, SW

Feeding/Lactation Consultant
Audrey Scollan, MA, CCC-SLP

Geneticist/Genetic Counselor
Patricia Galvin-Parton, MD

Oral and Maxillofacial Surgeon
Michael Proothi, MD

Oral and Maxillofacial Surgeon
Salvatore Ruggiero, MD, DMD

Orthodontist
Richard Faber, DDS

Orthodontist
Zachary Faber, DDS

Orthodontist
Leon S. Klempner, DDS

Otolaryngologist (ENT)
Jaime P. Doody, MD

Pediatric Dentist
Kimberly K. Patterson, DDS, MS

Plastic Surgeon
Alvin Wong, MD

Psychologist
Thomas Preston, PhD, ABPP/CN

Social Worker
Geoffrey T. O'Connell, LCSW/R

Support Group for Parents
Sherree O’Shea

Team Coordinator
Kristen Santos

To learn more about the role of each of our specialists, click here.

Common Conditions We Treat

• Cleft Lip
  • Unilateral Cleft Lip/Palate
  • Bilateral Cleft Lip/Palate
• Cleft Palate
• Congenital Ear Deformities/Microtia
• Craniofacial Syndromes
  • Apert
  • Crouzon
  • Microtia
  • Pfeiffer
  • Treacher Collins

What Is a Cleft?

A cleft is a separation in the skin, mucosa, muscle and bone that is normally fused together. No structures are missing, although they can be smaller than normal. Clefts can be unilateral (one side) or bilateral (both sides) and may include the lip, soft palate and hard palate, or a combination of lip and palate. This occurs during the first trimester when the area does not fuse. There is no single known cause, with genetics, environmental factors and nutrition all playing a role.

Types of Clefts

• Cleft Lip is a separation in the lip and often includes the base of the nose
• Cleft Palate is a separation in the hard and/or soft palate
• Submucous Cleft is a separation in the muscle of the soft palate with the mucosa intact, which may not be easily visualized

What Is Craniofacial Surgery?

Craniofacial Surgery is used to correct acquired or congenital deformities of the face, head, jaws and skull. Craniofacial Reconstruction is a series of procedures used to repair or reshape the face, head, jaws or skull due to birth defects or traumatic injury. These complex areas affect how your child's brain develops and also how the child breathes, chews, hears, swallows and even sees. The right care at the right time can improve your child's outcome, development and overall quality of life.

What Parents Should Know About Craniosynostosis

What Is Craniosynostosis?

Craniosynostosis is a rare condition that affects the head/skull and face. Worldwide, it occurs in one out of every 2,000 to 2,500 births. At birth, the normal skull consists of eight separate bones, which are joined by fibrous joints called sutures. These joints allow the infant's brain to grow and expand. Eventually, the sutures solidify to form the skull. Craniosynostosis occurs when one or more of the sutures close too early, and can cause problems with normal skull and brain growth.

What Causes Craniosynostosis?

Craniosynostosis is thought to be caused by a combination of genetic and environmental factors. Most cases, particularly those involving only one suture, do not have a single known cause. Some types are linked to specific genetic causes and tend to be more severe.

What Are the Different Types of Craniosynostosis?

• Scaphocephaly (also called sagittal synostosis) is the most common form of craniosynostosis, occurring in 50 to 60 percent of cases. It is characterized by a skull that is narrower from ear to ear and longer from back to front.
• Anterior Plagiocephaly (also known as unicoronal synostosis) occurs in about 15 to 30 percent of cases. The forehead and the brow stop growing on one side, and appear flattened while the forehead tends to bulge on the opposite side.
• Trigonocephaly (also known as metopic synostosis) is characterized by a noticeable ridge running down the forehead. As a result, the forehead may look pointed, like a triangle.

Another form of abnormal head shape is called positional plagiocephaly, which is not a form of craniosynostosis. It is characterized by the flattening of one side of the back of the head and is simply due to an infant’s preference to sleep in one position. It is estimated that 20 to 30 percent of all children born have some degree of positional plagiocephaly. Often this can be treated with positional changes and/or helmeting for passive molding, but does not require surgery.

What Are the Symptoms?

Changes in the shape of the infant’s head and face may be noticeable and are generally the first and only symptom. One side of the face may not be the same when compared to the other side. Craniosynostosis can also be associated with increased pressure on the brain if the head does not grow quickly enough to accommodate the brain's growth.

How Is It Diagnosed?

Craniosynostosis may be congenital (present at birth) or observed later, during a physical exam by your pediatrician. At Stony Brook Children’s, you’ll be asked if there’s a family history of craniosynostosis or other head or face abnormalities. You may also be asked about developmental milestones, since craniosynostosis can be associated with other developmental delays. A measurement of your child’s head is taken and plotted on a graph to identify normal and abnormal ranges. Diagnostic tests such as x-rays of the head and computed tomography scans (CT or CAT scan) may also be performed.

How Is Craniosynostosis Treated?

Treatment is determined based on your child’s age, overall health and medical history, and the extent of and type of craniosynostosis. If detected early, minimally invasive endoscopic surgery for craniosynostosis is generally performed at three to four months of age and typically takes between 90 and 180 minutes, with an average hospital stay of one night. Post-operative care for endoscopic craniosynostosis surgery often includes a custom-fit helmet for the infant to wear for up to a year, to help guide and mold the shape of the skull as the child grows. The endoscopic procedure offers comparable results to open surgery. And because there is rarely a need for blood transfusions with endoscopic surgery, the risk of complications is dramatically lowered. If detected later, your child may require open surgery as brain growth slows down after the first few months of life and does not drive growth of the skull as rapidly.

Traditional open-skull surgery is often performed between six and nine months of age and can take between two and eight hours. Blood transfusions are not always required but common with open surgery.

What Syndromes Are Associated With Craniosynostosis?

• Apert
• Crouzon
• Pfeiffer

Congenital Ear Deformities/Microtia

What Is Microtia?

Microtia means "small ear." Children with microtia are born with an ear that is overall smaller compared to the normal side. Its severity varies from having a slightly smaller ear to being born without an ear at all. Often, the part of the ear that allows you to hear sound is also affected. It affects one to two babies per 10,000 births. Ten percent of cases affect both ears.

What Causes Microtia?

There is no single factor that causes microtia. Genetics, environmental factors and vascular disruptions in early embryonic development play a role in various cases.

Are There Different Types of Microtia?

There are various ways to characterize microtia. The most common classification divides microtia into four grades. Grade I is a slightly smaller ear but with all normal anatomic portions present. Grade II is characterized by the upper structures being underdeveloped, with the lower half being mostly intact. The external ear canal in Grade II is typically narrowed but can also be completely closed. Grade III microtia is the most common type, and only the earlobe remains. Grade IV is an entirely missing external ear, also known as anotia.

What Are Some Common Issues in Children With Microtia?

Aside from hearing loss, children with microtia often face social stigmatization and impacts to their self-esteem. It can also affect their ability to wear glasses and masks.

How Is It diagnosed?

Microtia is most often diagnosed at birth by visual inspection. There are other congenital ear deformities that exist, but these are distinct from microtia.

What Are the Other Congenital Ear Deformities?

Other congenital ear deformities include prominent (protruding) ears, constricted (lop or cup) ears, Stahl's ear (Spock ear), cryptotia (buried ear), and accessory tragi. These do not fall under the category of microtia, but area also treated by our experts at Stony Brook Medicine.

How Is It Treated?

Treatment of microtia is complex and nuanced. There are two main options for reconstruction of the external ear: rib cartilage and porous polyethylene, often with use of a living membrane harvested from the scalp to help with coverage and healing. Each method has its own particular advantages and risks. Our experts at Stony Brook Medicine can perform both types of reconstruction.

What Is the Best Age To Treat Microtia?

Age at treatment depends on the type of treatment pursued. Rib cartilage reconstruction is usually performed no earlier than six to seven years of age. It also depends on how large the patient is and whether they have enough rib cartilage for the procedure. Cadaver rib can also be used, which means that the cartilage does not need to be taken from the child and sparing them an additional scar on the chest. With porous polyethylene reconstruction, reconstruction can take place earlier, as early as four to five years of age.

What Are Some Conditions Associated With Microtia?

• Treacher Collins Syndrome
• Hemifacial Microsomia

Patient Resources

Cleft Palate Foundation

Children's Craniofacial Association

Wide Smiles

Cleft Palate Foundation is a non-profit organization dedicated to optimizing the quality of life for individuals affected by facial birth defects. It was founded by the American Cleft Palate-Craniofacial Association in 1973 to be the public service arm of the professional association. CPF produces informational packets and operates the CLEFTLINE, (800) 24-CLEFT (800-242-5338), a toll-free phone service that provides information to callers about clefts and other craniofacial anomalies.

ACPA/CPF National Office
1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514
Phone: (919) 933-9044, Fax: (919) 933-9604
info@cleftline.org
 

Children's Craniofacial Association is a non-profit organization dedicated to improving the quality of life for facially disfigured individuals and their families. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional and educational concerns relating to craniofacial conditions. CCA advocates on behalf of and promotes awareness for the facially disfigured. Its Website contains information on craniofacial disorders in children as well as educational materials and doctor referrals.

Children's Craniofacial Association
13140 Coit Road, Suite 307
Dallas, TX 75240
Phone (toll-free): (800) 535-3643
contactCCA@ccakids.com.

Wide Smiles provides support, inspiration, information and networking for families everywhere who may be dealing with the challenges associated with clefting. In addition to its Web resources, it has a quarterly publication called Wide Smiles that is written by parents for parents of children born with cleft. This magazine offers “useful, practical, inspirational articles that speak to a lay audience of intelligent parents.” It discusses topics that touch these children at every developmental level.

Wide Smiles
PO Box 5153
Stockton, CA 95205
Phone: (209) 942-2812, Fax: (209) 464-1497
See information on how to get Wide Smiles.

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