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Cleft & Craniofacial Care
Comprehensive cleft care extends beyond surgery. Here you’ll find local medical teams, speech and feeding specialists, and psychosocial resources dedicated to supporting confidence, communication, and connection for individuals and families affected by cleft and craniofacial differences.
The information on this page is meant as easy to read, easy to navigate information. There are other websites that provide much more in depth information to help you through the journey but I wanted to create one that you can return to time and time again for easy to access information.
Overview and possible steps and procedures on the journey
At diagnosis
Preparing
1st year of life
Surgeries and procedures
Things to be on the lookout for
Understanding Cleft Lip and Cleft Palate
A cleft lip or cleft palate develops very early in pregnancy, when a baby’s facial structures are forming. Typically, the tissues of the upper lip and the palate (the roof of the mouth) come together and close within the first few months of the pregnancy. In some babies, these tissues do not fully merge, leaving an opening in the lip, the palate, or both.
A cleft lip can appear as a small notch in the lip or a split through part of the lip (an incomplete cleft) or a wider opening that may extend through the upper gum and palate and into the base of the nose (a complete cleft). It may occur on one side of the lip (unilateral) or on both sides (bilateral).
A cleft palate involves an opening in the roof of the mouth and may affect the hard palate, the soft palate, or both. There is also a form known as a submucous cleft palate, in which the muscles of the soft palate do not form correctly, but the tissue covering them looks intact from the outside.
A baby may have only a cleft lip, only a cleft palate, or a combination of the two.
HOW COMMON ARE CLEFTS AND WHY DO THEY OCCUR?
Facial clefts occur in approximately 1 out of every 600 births in the United States, making them one of the most common birth differences seen in newborns. They happen for many reasons, and for many, the exact cause is never known. Genetics can play a role, and certain environmental factors during pregnancy may also contribute. Sometimes a cleft is part of a genetic syndrome, but more often it occurs on its own without any additional medical conditions.
WHEN IS IT DIAGNOSED?
With advances in prenatal imaging, more and more families are learning of the diagnosis during a routine ultrasound. For others, the cleft is first noticed at birth. In some cases, especially when the cleft involves only the soft palate or submucous cleft, the difference may not be visible right away and might not be diagnosed until later in infancy or childhood, when symptoms prompt further evaluation.
STEPS ONCE YOU HAVE THE DIAGNOSIS
STEP 1: FIND A TREATMENT TEAM
STEP 2: PREPARE FOR BIRTH
STEP 1: Find a treatment team
WHAT IS A TREATMENT TEAM? A treatment team is a group of cleft specialists who work together with families and patients to design a treatment plan for a child’s cleft care. The best care for a child with a cleft or other craniofacial birth difference happens when a family works with a cleft palate or craniofacial treatment team. The treatment team includes the child, the child’s family, several doctors, and other cleft-care specialists. Team care begins when the prenatal diagnosis is made and is vital through the first days learning to feed a baby with a cleft. Your family’s relationship with a treatment team will support you and your child throughout childhood, the teenage years and beyond.
Some of the cleft-specialists that contribute to team care may include:
• a surgeon (such as a plastic surgeon, an oral/maxillofacial surgeon, a craniofacial surgeon, an otolaryngologist, or a neurosurgeon);
• a speech-language pathologist who assesses speech and feeding problems
• a pediatric dentist or other dental specialist
• an orthodontist who straightens the teeth and aligns the jaws;
• a geneticist who screens patients for craniofacial syndromes and helps parents and adult patients understand the chances of having more children with these conditions;
• a nurse who helps with feeding education and monitors child’s health; •
a psychologist or other mental health professional who supports your child and family’s emotional needs;
• an audiologist who assesses hearing;
• a pediatrician who monitors overall health and development; and
• other specialists.
Coordination between the family, child, and treatment team about goals for care and treatment lead to the best outcomes for the child. As your child grows, your child will be assessed by the treatment team every 1-2 years through young adulthood.
PREPARING FOR THE BIRTH
The Birth of your Baby
Unless your baby has issues other than their cleft, things should not need to be any different when you give birth. You should not need to be separated from your baby in their first hours, and in all likelihood the only thing that will be different about your experience of giving birth will be your baby’s cleft.
If your baby has a cleft lip only, you may still breastfeed as long as the shape of their cleft will allow them to form a seal around the breast.
Your baby may have a cleft palate as well as a cleft lip. You may still be able to breastfeed, but in most cases your Cleft Nurse Specialist or a feeding specialist will have to show you how to feed your baby using special bottles and teats. You can use this as a way to supplement breastfeeding, or as a replacement. This can mean you’ll have to stay in the hospital for a little longer than anticipated, as they will want to make sure your baby will be able to feed properly before sending you home.
Read more about feeding a child with a cleft.
What do I need to have ready?
This depends on what your baby’s feeding needs will be, so it’s hard to say for sure before birth. You may need to use special bottles and teats like those sold by CLAPA to feed your baby, but you will only find this out once they are born and the Cleft Nurse Specialist has conducted a feeding assessment.
CLAPA provides some of these specialist bottles and teats, including MAM and Dr Browns. We send a free ‘Welcome Pack’ to new parents who contact us, but we can only do this once the child is born and a feeding assessment has been carried out.
It’s understandable that you’ll want to get everything in place before the arrival of your baby, but if you spend money on feeding equipment you may not be able to use it once your baby is born. In all cases, if you have questions or concerns, we advise you to get in touch with your Cleft Nurse Specialist.
If you already know that you’d like to express and/or bottle feed, see our kit lists put together by two mums of babies with a cleft lip and palate.
Recommended Kit List
KIT LIST: https://www.clapa.com/treatment/feeding/bottle-feeding-expressing/
Two mums put together the below suggested kit list for formula feeding. They both had an antenatal diagnosis of cleft, and so had this all ready for when their babies arrived. These are suggestions only and you may find that something else works better for you. If so, let us know in the comments.
Your chosen formula milk. We both found the organic Hipp brand agreed best with our babies and their sensitive digestive systems. It is useful to get the formula cartons as well as the formula powder. The cartons are more expensive, but very helpful in the early days when you forget to pre-boil the kettle to get cooled, boiled water. The cartons are also useful for when you are out and about as they are easier to use. The formula powder is the most economical way to give your baby formula milk and great for every day use (once you are used to storing pre-boiled water). You can get Hipp formula at Boots and most large supermarkets.
Plastic water holders (ideally BPA free) so that you can store any pre-boiled water. Amazon do a great range.
Electric sterilising machine for the bottles and teats. We both use the Philips Avent Electric Steam Steriliser which makes sterilising very easy. It is large enough to be able to accommodate the MAM brand of bottles. The cycle is quick which is handy when you have forgotten to steam a set of bottles and need one quickly.
Bottles and teats. We were advised to get MAM squeezy bottles and MAM orthodontic teats which we both purchased from CLAPA. We would stress that you should get advice from your cleft nurse about the best feeding solution for your baby.
Formula milk powder dispenser for when you are out and about. They are useful as you can put a pre-determined number of scoops of powder in them. This makes preparing a bottle very speedy when you have a hungry baby. Also, ideal for hygienic transport of baby milk powder formula when away from home. We liked the ‘bibi’ brand which you can get on Amazon.
What you might expect (generally speaking)
Children with cleft lip with or without cleft palate face various challenges, depending on the type and severity of the cleft, including:
Having a hard time feeding. One concern right away after birth is feeding. While most babies with cleft lip can breastfeed, a cleft palate may make it hard to suck.
Ear infections and hearing loss. Babies with cleft palate are especially at risk of developing middle ear fluid and losing hearing.
Dental problems. If the cleft extends through the upper gum, teeth may not develop properly.
Having a hard time with speech. Because babies use the palate to form sounds, a cleft palate can affect the usual development of speech. Also, speech may have a nasal sound.
Challenges of coping with a medical condition. Children with clefts may face social, emotional and behavioral problems due to d
Signs arise, such as:
Having a hard time feeding.
Nasal speaking voice.
Constant ear infections.
Rarely, having a hard time swallowing. Liquids or foods may come out of the nose.
SURGERIES
Surgery (from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/cleft-palate/diagnosis-treatment/drc-20370990)
Cleft lip repair — between 3 and 6 months of age.
Cleft palate repair — by 9 to 18 months (usually around 1 year) or earlier if possible. This surgery occurs after any cleft lip repair.
Follow-up surgeries — between age 2 and the late teen years.
Cleft lip repair. To close the separation in the lip, the surgeon makes cuts on both sides of the cleft and creates flaps of tissue. Then the surgeon stitches these flaps together, including the lip muscles. The repair should create a more usual lip appearance, structure and function. Nasal repair, if needed, is usually done at the same time.
Cleft palate repair. Surgeons may use various procedures to close the separation and rebuild the roof of the mouth (hard and soft palate), depending on your child's situation. The surgeon makes cuts on both sides of the cleft and repositions the tissue and muscles. Then the surgeon stiches the repair closed.
Ear tube surgery. For children with cleft palate, surgeons may place ear tubes to lower the risk of constant ear fluid that can lead to hearing loss. Ear tube surgery involves placing tiny, bobbin-shaped tubes in the eardrum to create an opening to prevent fluid buildup.
Surgery to improve appearance. A child may need more surgeries to make the mouth, lip and nose look better.
Some children with more-severe clefts of the lip and palate may need orthodontic treatment before surgery to bring the edges of the cleft closer. Usually this involves nasoalveolar molding with an orthodontic device or special taping across the cleft.
Nasoalveolar molding is not a surgery. It is a process that involves applying tape across the cleft, and sometimes appliances that improve the shape of the nose. In patients with cleft palate, an additional prosthetic may need to be placed at the roof of the mouth to better align the structures of the upper jaw, also known as the maxilla. Consultation with a craniofacial team early on — in the first 1 to 2 weeks after birth — is important to determine if your child qualifies for nasoalveolar molding.
Surgery can improve your child's quality of life and make your child eat, breathe and talk better. Possible risks of surgery include bleeding, infection, poor healing, widening or raised scars, and short- or long-term damage to other structures.
Treatment for complications
Your healthcare professional may recommend more treatment for other functional and structural changes that cleft lip and cleft palate cause, such as:
Feeding strategies, such as using a special bottle nipple or feeder.
Speech therapy to make it easier to speak.
Orthodontic adjustments to the teeth and bite, such as having braces.
Monitoring by a pediatric dentist for tooth development and oral health from an early age.
Monitoring and treatment for ear infections, which may include ear tubes.
Monitoring hearing and providing hearing aids or other devices to a child with hearing loss.
Therapy with a psychologist to help the child cope with the stress of repeated medical procedures or other concerns.
Regular screening and treatment for health problems is mostly limited to the first two decades of life, but lifelong monitoring may be needed depending on your child's individual health problems.
Some questions to ask your healthcare professional may include:
Does my baby have a cleft lip, cleft palate or both?
What caused my baby's cleft lip or cleft palate?
What tests does my baby need?
What is the best treatment plan?
What are the alternatives to the treatment approach that you're suggesting?
Are there any restrictions that my baby needs to follow?
Should my baby see a specialist?
Are there brochures or other printed material that I can have? What websites do you recommend?
If I choose to have more children, is there a chance they also may have cleft lip or cleft palate?
Don't hesitate to ask other questions.
What to expect from your doctor
Your healthcare professional likely will ask you several questions, such as:
Does your family have a history of cleft lip and cleft palate?
Does your baby have problems while feeding, such as gagging or having milk come back up through the nose?
Does your baby have any symptoms that worry you?
What, if anything, seems to make your baby's symptoms better or worse?
Preparing and expecting questions will help you make the most of your appointment time and allow you to cover other points you want to talk about.
Cleft Lip Repair
Cleft lip repair surgery takes place when the baby is at least 3 months old.
A cleft lip repair involves reconstructing the shape of the lip and the nose and joining the tissues that were not joined before birth. There are a number of different techniques which depend on the shape of your baby’s cleft and the surgeon’s preference. If the palate is involved, part of it may be repaired at the same time.
Dental impressions may be taken before or during the operation so the team has an accurate record of your baby’s cleft to compare with the future development of their mouth.
Afterwards, some bleeding from the mouth is to be expected, and you may see some stitches, swelling and crusting on the lip. Sometimes a small piece of foam is used to hold the nose in its new shape. Splints are sometimes placed on the baby’s arms to stop them from touching the stitches.
Your baby will look quite different after the surgery, and this can be quite distressing to some parents. Many say that they miss their baby’s ‘old’ smile and that it takes a while to get used to how they look following the cleft repair. Prepare yourself for this as best as you can using our surgery gallery and by reading stories from other parents, and do ask for support if you need it at this time.
The surgery usually takes from 1-2 hours depending on the cleft, but your baby will likely be away from the ward for 2-4 hours.
Babies will usually stay in hospital for one or two nights after the operation, however if the cleft is quite small some babies may even be discharged on the same day.
ABOUT AFTERCARE
Pain Relief
What pain relief will my child have?
This varies according to the operation and also whether there are any medicines that your child cannot take. Usually there will be regular Ibuprofen, Paracetamol and possibly Morphine, either through a drip or as a liquid by mouth. Talk to the ward staff if you have any concerns about pain relief, both at the hospital and afterwards at home.
Will we get to take pain relief home?
The ward provides pain relief on discharge but it is always a good idea to have some Paracetamol and Ibuprofen already at home.
How long will my child need to take pain relief?
Children’s sensitivity to pain varies but hospitals usually recommend you give regular pain relief for one to two weeks after discharge. Always follow the advice given to you by your Cleft Team, and go straight to them if you have any concerns or questions. Every child’s needs are different and it’s vital that you get advice tailored to your specific situation.
Caring for a Lip Scar
A visible scar will be left after cleft lip repair surgery and it may appear red, swollen and bruised after surgery, but this will fade considerably as it heals and your child gets older. Swelling may take a few weeks to settle, and the scar may get thick, lumpy, and even start to pull the lip back up as it shrinks in the first few months. This is all part of how a scar heals– be aware that it can take years for the scar to ‘settle’ into its final appearance.
It is important to keep the scar clean and free from scabs, as this helps with the removal of stitches. You will be shown how to keep your baby’s lip clean before you go home from the hospital.
Generally, you are advised not to use a dummy/comforter for several weeks after surgery, and to try and stop your child from putting their fingers or toys into their mouth.
Infections are rare, but look out for warning signs including a raised temperature and loss of appetite. If you suspect anything, call the ward or your GP.
Your surgeon will give you expert advice on how to care for your child’s scar. Follow this advice closely and consult your team or your Cleft Nurse specialist if you have questions or concerns.
Sometimes stitches in the wound are dissolvable, and sometimes they will need to be removed. Either way, you will have to come back to the hospital for a follow-up appointment not long after the operation, and you will get information about this before you go home.
Creams and Oils
Some teams advise massaging a baby’s scar with special creams or oils once the wound has healed enough. There are a number of different options available, such as Bio Oil or Vitamin E. Some parents may recommend products that appeared to work well for them, but in all cases check with your Cleft Team first and follow their advice. What works for one child may not be appropriate for all, and some ‘essential oils’ may contain other ingredients that could be harmful.
Feeding After Surgery
Some babies will feed after surgery without too much trouble, others will take longer to settle back into a comfortable feeding routine.
Generally, the surgical team are happy for you to start feeding as soon as your baby is awake after surgery, though this may be uncomfortable for your baby at first, and it may be especially difficult if their lips are numb from surgery.
You will not be discharged from the hospital until the team are confident that your baby will be able to feed well at home, so rest assured that you will be supported by the team through any feeding difficulties you have after surgery.
After a palate repair, your baby will usually be able to suck, so you may be able to move on to different methods of feeding. Every child is different, so consult with your Cleft Nurse specialist for help with this.
“It filled me with so much happiness hearing him being able to suck a bottle and make such cute little sucking noises. Something he should have been able to do from birth. We were advised to carry on gently squeezing his milk bottle for a few weeks to give the palate time to heal properly. It took [him] about two months before he was totally proficient with the sucking; what used to take forty minutes to have a bottle of milk can now sometimes take about five minutes. It is pretty mind-blowing that [he] is now able to suck a bottle of milk like any other baby of his age who were born with a normally-functioning palate.” – Katie J, South London
Get Support
If you have questions or concerns, either before or after surgery, it is always best to contact your Cleft Team in the first instance. They will be able to give you advice tailored to the hospital and your child, and you can be sure that their information is reliable.
If you would rather talk to another parent, try our Parent Supporters. They have been trained by CLAPA to support others at difficult points in the treatment pathway, and will understand better than anyone what you will be going through during and after surgery.
Our Facebook Group is also an excellent source of support, and with over 7,000 members you’re sure to find a listening ear even in the middle of the night. However, do remember that any advice from this group may not be appropriate for your particular situation, and it should never replace the advice and information you will receive from your team.
You can also read stories from other parents about their experiences with surgery and what followed.
Alveolar Bone Graft (ABG) Surgery
If your child’s cleft affects the alveolus (the bone in the gum where the teeth sit), they will probably need surgery to fill the gap in their gum so that their adult teeth can erupt (come through) properly. A ‘bone graft’ involves borrowing a bit of bone from one part of the body to help repair another.
Preparation
Assessment for this surgery will begin between 7 and 9 years of age, and the surgery itself will usually be completed by age 12.
The orthodontist will often need to widen the area around the cleft to allow the surgeon to access it easier. This can involve a brace being fitted, most commonly a ‘quadhelix’. This takes place 6-9 months before the ABG surgery. The orthodontist may also want to arrange to take out some of your child’s top baby teeth next to the cleft. This will give them more room to work with inside the mouth.
If your child is nervous about the surgery, you may be able to arrange a visit to the hospital so they can see where their bed will be and meet some of the people that will be looking after them. Reassure them that they will be asleep the whole time, and that numbing cream is usually available to help with any injections. They may also benefit from talking to another young person with a cleft who has already had their bone graft.
The Surgery
“Say which side of the hip you want the bone to be taken from – remember you will have a scar here for the rest of your life.”
As with most surgeries, your child won’t be able to eat anything for a while beforehand. The hospital can give you specific guidance on this. This surgery will take place under general anaesthetic (where your child is fully asleep).
During the procedure, bone marrow will be taken (usually from the hip, sometimes from the tibia (shin) bone) and grafted into the gap left by the cleft. If the bone is taken from the hip, a small cut around 5cm long is made low down on the tummy in an area that is usually covered by swimwear, a window is made in the outer surface of the bone and the inner marrow bone is scooped out. This is then closed and stitched up. The marrow will eventually grow back and the hip will be good as new.
The mucosa (red tissue covering the bone of the gum) is then opened up and peeled away from the gap in the bone. The mucosa from each side is then stitched together to make a ‘pocket’, and the bone marrow is packed into this pocket so the entire gap is filled. The gum is then closed over the bone. The ‘floor’ of the nose may also be repaired at this time. This can help the bottom of the nose look straighter, but won’t change the shape of the face.
Most children are admitted onto the ward the day before surgery and are able to go home the day after. Complications are rare and minor, and the scar on the donor site (hip or shin) will fade considerably with time.
After Surgery
Afterwards, the ‘donor’ site where the bone was taken is often sore, and your child’s mouth will feel quite strange. They will have a ‘drip’ with painkillers to help ease the discomfort.
Your surgeon will be able to advise on when your child will be able to eat and drink again. They’ll have to stick to ‘soft’ foods for a while after they go home until they’re healed.
It’s vital that the mouth is kept very clean for the first 10-14 days after surgery. This is because the bone placed in the gap will have ‘new’ bone growing around it, and at this time it’s very vulnerable to infection. Good, careful brushing and using a mouthwash recommended by your surgeon will help your child recover.
Usually your child will need at least a week of school to make sure they don’t get an infection from anyone and can rest and recover. Any sporting activities should be avoided for at least two weeks, but check with your surgeon about this. It may take several weeks before the swelling of the face goes down and the inside of your child’s mouth starts to feel normal again.
Your child will need to come back a few weeks after the operation so the consultant can make sure everything is healing properly. After 6 months, your child will have an x-ray to see how successful the treatment has been. It may take several months or even a year before the adult canine tooth erupts through the new bone graft. If teeth are crooked once they’ve come through, these can be straightened 3-6 months after the bone graft. Braces are usually not used until all a child’s permanent teeth have erupted into the mouth.
RESOURCES FOR ALVEOLAR GRAFT SURGERY
A Child's Guide to Alveolar Bone Graft (ABG) - A VIDEO BY A CHILD ABOUT HER ABG: https://www.youtube.com/watch?v=1bVQdE4Cj4E
Bone graft tip sheet created by young people: https://www.clapa.com/wp-content/uploads/2023/10/CYPC-Bone-Graft-Tip-Sheet.pdf
RESOURCES
ACPA booklet on prenatal diagnosis: https://www.cleftclinic.org/wp-content/uploads/2019/11/ACPA_booklet_prenatal.pdf
CLAPA: https://www.clapa.com/treatment/diagnosis-birth/
Care from all specialties on our team / any cleft palate team
Specialty Speech Language Therapists
Experts helping children and adults improve speech clarity, feeding, and swallowing function.
Specialty Therapists
Whole page dedicated to psychosocial care for individual and family
Specialty Dentists and Orthodontists
Our Dream Team
About team care and what makes up a team and maybe highlight our team or link back to Saint Johns
Providence Saint John’s Cleft Palate Center
About our team
Additional Local & National Connections
Community-based programs and organizations that help bring care and connection together — from caregiver workshops and senior centers to university-affiliated clinics and local nonprofits.
Schools
Specialized Care