a resource for, and network of, individuals with facial differences, parents, families, friends, and health care professionals
Jaimeson and Anderson at Park

Frequently Asked Questions

This following question-and-answer forum is intended to provide general information to individuals, families, and friends regarding medical aspects of various craniofacial conditions. This information was obtained from an ongoing forum that was open to question submission in 2000 and 2001. It is our hope that this information will encourage individuals and parents to seek out a qualified craniofacial surgeon/team if treatment is desired.

Dr. Eric Stelnicki

This information is made possible by the gracious donation of time and expertise by Eric Stelnicki, M.D., Director of Pediatric Plastic, Cleft & Craniofacial Reconstructive Surgery and Chairman of Basic Science Research at the Cleveland Clinic Florida. For more information about Dr. Stelnicki, please visit his Web site.

At what age should my child, with Treacher Collins syndrome, consult with a craniofacial surgeon/team?
The day of birth. Children with Treacher Collins have complex facial-skeletal and airway issues, which often require expertise of an experienced craniofacial surgeon to prevent unnecessary operations or morbid consequences.
What is distraction osteogenesis?
A surgical technique which slowly stretches deficient bone, and teaches the body to create new bone where none had existed before. This technique now has wide-spread application in reconstruction of the facial skeleton.
Our daughter is diagnosed with a Lymphatic malformation, it is under her eye and beside her nose, the Doctor we saw said it may be a venus malformation, but he said he woudlnt know until they take it out. We have surgery shceduled for August, we were wondering what information we might find concerning these malfoamtions, and their removal.
A CT and MRI/MRA scan can sometimes help to tell the differnce, but many lessions are mixed. Make sure the person taking it out is experienced. Also, it is best to consult a vascular malformations team.
I have a 11month old twin and one of them has goldenhar syndrome and vsd and some other heart problem had one surgery in Boston last agust and will have anouther in end of the year could you tell me where can I find information about all the cranifacial team in USA and do you know of the team in Boston and if they have a e-mail address? Are there any picture gallery that I can see before and after like jaw surgery? Where should a mother go for support if her child has Pfeiffer Syndrome she has been having bad time finding it and need help can you help her?
Sure, The team in Boston, at Boston Children's Hospital is Great. Dr. John Mulliken heads the team and he is very experienced. As for photos, most Drs. have before and after pictures in their office. Ask to see them. As for Pfieffers, please have the mother contact my office at 1-888-97-FACES. We have alot of experience with craniosynostosis syndromes and we we would be glad to help you. In addition, if you have specific questions about craniofacial microsomia, I would be glad to help you.
My son has a cleft palate and a small lower jaw/chin. My doctor says it is not Pierre Robin syndrome and that his jaw should "come out" very quickly and grow into his face. He is 6 months old right now and isn't going to have repairs done until 10-12 months of age. I was wondering if I should expect his jaw to develop normally, how long it may take, and if there is anything I can do to help him recover faster or better.
Many patients with jaw hypoplasia do experience "catch up growth" later in life. Therefore, unless there are breathing problems, focus on the cleft palate now. Just be aware that having a small jaw can increase the risk of respiratory problems after the palate repair.
I am a physical therapist. I was just given a home care case with a 15 month old boy with a diagnosis of torticollis (right sternocliedomastoid is tight). He has mild assymetries in the shape of his face, and the left side of the back of his skull is very flat. He has a three month old brother who I decided to check over. The 3 month old has increased tone in his upper extremities, and tilts his head to the right when supported in an upright position. But, his skull, and face shape looks fine, so far. I recommended that the mom get him physical therapy services also. I have treated other children with torticollis. But, the 15 month old's bone structure has been affected more severly than I have usually seen. I have two questions. First, is there anything that should be done for the 15 month old by an orthopedist. The second question is, considering the history of the 15 month old child's tendency for skull and facial deformity, should I recommend that the parents have the three month old followed by an orthopedist that specializes in skull and facial deformity, in case he begins to develop the same problem, so it can be caught early, and treated?
The appropriate person to see these children is craniofacial surgeon connected to a craniofacial team. These children need physical therapy with you and at home. They also need a molding helmet such as a DOC band to correct the skull abnormality. The sooner they start the better.
My daughter was just diagnosed with hemifacial microsomia. Where do I turn and what do I do now? My daughter is 2 years old and was born with a heart defect (VSD) could these two be related? I would appreciate any and all info you could give me.
Don't be afraid. It is all fixable. First, adress the heart. You must see a board certified pediatric heart surgeon to evaluate the need for surgery. Also, any craniofacial surgery must be accompanied by antibiotic coverage of the heart valves. In term of the hemifacial microsomia, you need a good craniofacial team. It must include a craniofacial surgeon, a good ENT and audiologist, a pediatric dentist, and orthodontist who have experience treating this problem. Dont just go to "anyone". This is a rare condition and must be treated by a specialist. A craniofaical team will be able to handle all your childs needs and correct many, if not all, of the problems. Call the ACPA and find the team closest to you.
I am 25 weeks pregnant and learned my daughter has a unilateral cleft lip and possible palate. I have been researching several teams and the time limits for the initial repair have all been different. I would like to know what the difference is in waiting. There is a surgeon in Virginia who does the surgery after birth and the majority of other surgeons tell me at 10 weeks. Is there any reason why we should wait?
It is surgeon- and treatment-dependent. At our team, we begin a process of nasoalveolar molding at age 2 weeks. This is a presurgical process that brings the lip and gum line together and shapes the nose into a "normal shape. We believe that this gives the best results with the least number of surgeries. We then do our lip repair at roughly 3 months of age. Others do not use this protocol. The important thing is that you are part of a good cleft team and that the surgeon has a lot of experience.
My daughter is 2 yrs old and has a mild case of TCS. The main surgury she would need is on her underdeveloped cheekbones. I wondered what was your opinion about the ideal age to do this, or what age is the youngest possible to do this. Is one operation enough for underdeveloped cheekbones or are a few operations required?
The youngest age, In my opinion would be age 4. This would involve either bone grafting or distraction osteogenesis. There are several options for the cheeks including bone grafts, distraction, fat injection, implants, microvascular free flaps, and others. You must see a craniofacial specialist to decide which is best for you.
I am a Speech-Language Pathologist and am working with a four year old boy who had surgical intervention for craniosynotosis at age 10 mo. I'm not sure if it was the single suture type problem or multiple—the child has some notable oral-motor weakness of lips and cheeks and associated mild speech problems. Fine motor problems with hands are also an issue. Are these clinical symptoms likely related to the cranial problem or are they likely unrelated? This is the second child I've seen this fall with a history of craniosynostosis—both have speech problems. This is a new diagnosis to me.
Metopic craniosynosotis and some of the syndromes are associated with speech anomalies. Most of the others are not. However, these children can have underlying CNS anomalies just like any other child.
Is there a craniofacial abnormality/syndrome that results in a child having an "elfish" look to the face? Child has dysmorphology of ears - they look different from one another but are both low set and very prominent. Jaw is Pierre Robin type. Developmental picture is of child with delays in speech, cognitive and motor skills, recurrent middle ear problems. Child also seems to have velopharyngeal weakness - with associated hypernasal voice.
There are a variety ranging from Nager's, to Freeman-Sheldon, etc. You must see a craniofacial genetic specialist who is associated with a top craniofacial team.
Which method of jaw distraction would you recommend for a 2.5 year old child with TCS and a Tracheostomy. 1) Use of the Internal device to distract the jaw in one direction. 2) Use of an External bi-directional device to distract the jaw. I think with option 1) an orthodontist may then attempt to move the lower jaw closer to the top jaw.
It all depends on how hypoplastic the jaw bone is. In mild cases, an internal device works well, but in cases of severe mandibular hypoplasia, an external device—which allows 3-dimensional control of movement—is the best. In the most severe cases, a bone graft is needed first, and here we prefer vascularized bone. As for the orthodontist, it is always good to have one around to help make decisions about the distraction.
Our 2.5 year old has TCS and severe coanial atresia. The bone blockage appears to go all the way to the base of the brain. How successful is an operation via the palet to remove the bone and create an airway. What complications may arise if any other than the opening closing over? Yes this is the same boy about to have one of two types of jaw distraction.
The operation is usually quite successful. Expect there to be stents in the nose for a few weeks post op. The biggest complication is that it may re-close, but as with any surgery, there is the risk of bleeding, infection, airway compromise, and a very small risk of fatality.
I am writing on behalf of some friends, who live in the UK, who have a 6-year-old daughter with TCS (and a tracheostomy tube). When their daughter was 4 weeks old, their plastic surgeon split her soft palate in an attempt to improve her airway (and prevent a tracheostomy). This procedure was unsuccessful, and the operation was reversed eight months later. They have asked that I contact you to inquire as to how this procedure could have had an impact on the speech difficulties that she is having today. They would also like to know what function the uvula serves (regarding gag reflex, speech, etc), since their daughter's uvula is absent.
Any disruption of the soft palate has the potential for an adverse effect on speech. However, if the palate is properly repaired, there should be no problem. The uvula itself has little importance in speech production. It is the muscle called the levator veli palantini which is the most important for speech. The absence of the uvula will have little effect on the speech of this child.
Our son has Goldenhar Syndrom. He is 11 weeks old right now. Do you recommend any surgeons for his craniofacial problems here in Florida? We have contacted the World Craniofacial Foundation and found doctors in Dallas, Texas. But one with experience in Florida would be much closer to home.
In Florida, the craniofacial centers with experience include our Center at Cleveland Clinic Florida, to which you can travel for free by air. We have the ability to have anyone in the State flown to us at no cost for the airline. Other centers include the Univeristy of Florida (Shands), All Children's in St. Petersburg, St. Joseph's, Miami Children's, and the University of Miami. There are others, but these centers are the best known.
I am a graduate of all the craniofacial operations. I'm 37 and was born with a bilateral clef lip & palate. My operations were completed when I was 16. I'm writing a screenplay about this time and what it was like. My question is can you give me the medical terms/names for these operations I had during this time: the first was where they broke the bones in my nose to bring them closer together, the second was an operation where they tightened up the nostrils on to my lip, and the final one was a three stage operation where they removed my upper lip scar tissue and replaced it with a part of my bottom lip. The last one was the most fun (sarcastically speaking)!
1) Cleft lip rhinoplasty 2) sounds like a Wier Incision 3) Abbe' Flap I hope that this helps. You can request a copy of your medical records, which will have the exact names.
Our 4 year old daughter (born December 25th) has TCS. She has a trach since she was 2 months old. Her cleft palate has been closed in 2 sessions, the last repair was when she was 2 1/2 years old. She had an external distraction when she was almost 2 years old, which has not been as succesfull as hoped, for when her tonsils were removed at the age of 3, it was obvious that her trach could not yet been removed. Her tongue still closes off most her throat. She can eat and drink anything she wants without having problems. Her speech is rather good. My question is this: do you have suggestions for us how to get rid of the trach? Just to give us an idea what we can expect when we visit the doctors about this. My hope is, that you might have a fresh view from the distance for we live in the Netherlands.
When I do distraction at an early age I always over distract. This makes the mandible too large initially, but then the child grows into the mandible by age 4-6. Without overcorrection, the story you are telling is common. It is possible that you could have a second distraction. If you do, then you must overcorrect. In addtion, you need to have a full ENT evaluation to make sure that there is no abnormality in the trachea that would prevent decannulation. Lastly, a full craniofacial CT scan and neck MRI would be helpfull to make sure bone grafting of the mandible is not a prerequisite to a successful distraction. If you would like to send me photos and CT scans I would be glad to evaluate things further.
I am 19 years old and I live in Leavenworth, KS. I am having some problems with my cleft palate. It almost seems as if the hole in the roof in my mouth has re-opened. I was seeing Dr. Green for awhile and we were going to go ahead and have the surgery done. But, I'm not able to do that at this point and time. I am having extreme problems eating and drinking, everything comes back up through my nose. Is there anything that can be done or is there anyone who supports this kind of thing?
You have an oro-nasal fistula which is present in up to 10% of people with cleft palate. There are many reliable surgeries which can be used to fix this problem. In the short term you can go to an orthodontist and have a retainer like plate made called an obturator that will cover the hole. Please send me a photo of your fistula so I can advise you further.
My four year old daughter has TCS and I'm concerned about her speech. She had a trach placed shortly after birth which was removed when she was eighteen months old and has seen a speech pathologist since birth. Her speech intelligibility is about 60% with a lot of hypernasality. Is there is a surgery to diminish hypernasality without compromising the airway? As well as, could jaw distraction help improve speech.
Jaw distraction will not help hypernasal speech. In some cases it may make it worse. It can help to improve sibilant distortions. She is four. Therefore it is essential that she receive aggressive speech therapy at this age. If her speech is not corrected now, she may develop abnormal speech patterns that will persist. She must be involved with a good craniofacial team. It is unlikely that the tracheostomy had anything to do with her hypernasality. This is usually an issue of soft palate function. Any surgery to help VPI (hypernasality) has the risk of causing apnea, but this risk is low if done by an experienced surgeon.
My baby has a cleft palate and the surgeon has recommended we install an expansor in the palate so the premaxilla will fit in better when surgery time comes. He is 10 months old, and my question is if this expansor is painful and/or necessary before the surgery.
Sometimes in infants with a cleft palate the gum line, called the alveolus, collapses together. When this happens it is harder to repair the gum line without properly aligning it first. This may be what your surgeon is saying. However, in terms of the palate in a 10 month old, it is rare to want to expand or make the cleft wider. Making the cleft wider would make the surgery more difficult. Therefore I am not sure what you are being told. I would like to talk with you more about this. Please send a copy of your doctor's last note or the craniofacial team evaluation to me so I can give you a better idea of what is going on.
My two year old neice has TCS. She was born with a cleft lip and palate. She already had surgery on her lip and this summer her doctors plan on working on her palate. She has a very wide gap and her doctors are talking about taking a flap from the back of her throat to cover the gap. Then later going back and opening up an airway. (She presently has a trach) Is this a fairly common procedure and if so how risky is it? Her parents are hoping to find another team who could give them a second opinion.
It is rare to need what sounds like a pharyngeal flap at the same time as the initial palate repair. This is done sometimes in cases of severe deficiency or when extra length is needed to the palate. The risk of the procedure is low. especially with the trach in place. If you want a second opinion, contact the ACPA for other craniofacial teams in your area.
My son is 61/2 months old. He was born with a cleft lip. I am breastfeeding and would like to continue after his surgery. Has this been successful for others? Do you have any additional information about breastfeeding babies born with a cleft?
It sounds as if you have been successful with your breast feeding thus far, therefore there is no reason to expect that you would not be able to continue breast feeding after surgery. The feeding of a cleft child by breast before the surgery is the difficult part and you have already overcome this. I salute you. Initially after surgery, there may be some initial discomfort and I have my families feed the child by bottle or tubed syringe for 2-3 days. After that, breast feeding can resume, if your surgeon is comfortable with this. Remember, there are a lot of different techniques for lip repair, so you should discuss this with your surgeon before the operation. Medela corporation makes breast feeding devices to aid cleft children and they have more information on this subject.
How do you get involved, as a parent, with craniofacial care?
There are several ways. On a national level, you can contact the Cleft Palate Foundation (CPF) for parent-related information, and to become involved in the organization. On a statewide level, there are similar orgainzations in each state. Florida's is called the Florida Cleft Palate Association. The names of organizations in other states would be available through the Cleft Palate Foundation. Lastly, you can work closely with your local craniofacial team to meet other parents who have children with similar craniofacial differences.
It is not the implied or expressed intent of Friendly Faces to endorse, through this forum, the commitment to services with any one craniofacial surgeon/team. Friendly Faces recommends only that the selection of a craniofacial surgeon/team is entered into with careful and thorough consideration. A list of referrals to health care providers and/or teams, in the US and Canada, may be obtained from the Cleft Palate Foundation (CPF) by calling 1-800-24-CLEFT, or via e-mail.
The information provided here is intended as an initial guide and source of general information and is not to be used as a definative source in the place of any treatment or proper consultation. Friendly Faces recognizes that the situation of each individual is unique and should receive the specific attention of qualified health service providers. Medical decisions of any magnitude should be made only after a complete and professional consultation with a craniofacial surgeon and/or team. Neither Friendly Faces nor Dr. Eric Stelnicki will accept any liability for any perceived or actual adverse affects resulting from the misuse of the information provided here.
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