Before you begin, read our Disclaimer.

Here at cleftAdvocate, we know first-hand what it's like to face the challenges and unknowns when a child is born with a cleft.  Many years ago, while information was available about cleft lip and palate, getting that information out to those who needed it was a whole other story. 

By embracing the internet, you have the means to research each and every question that you have, as well as the opportunity to meet other parents who can offer insight, advice and support.

On this Q&A page, we will offer brief, pointed answers to the most common questions asked after the birth of a child with cleft lip and/or palate.  You will also find QuickLinks some very good "starter pages"...information you'll need to get started on the right foot.  Then, when you're ready for some more extensive information, go to the Learn More page.

While it is in your child's best interest to learn as much as you can, the task can seem extremely daunting in the beginning.

So our heart-felt advice to new parents is this:

Get your education in stages...just as your child's care will be in stages.  Don't overwhelm yourself, or start imagining things that might happen down the line. You can best care for your child--and yourself--by learning about the issues at hand...the issues you need to tackle today.  Save the rest for later.

Keep an open mind...No single website will have all the answers for you.  No one person's advice will be the end-all, be-all for your situation.  Don't be afraid to ask questions, don't be afraid to collect information from numerous sources, and never hesitate to contact cleftAdvocate if we haven't addressed your concerns here.

Ask questions...Realize that  when you have a question, you deserve an answer.  Don't ever feel like your concerns are unfounded, or that a question is "stupid".  Call the pediatrician or the cleft team.  Sometimes all it takes is a quick phone call to set your mind at ease.  Additionally, there are many parents out there who have been through exactly what you're going through...and we're all here to help.  If someone offers their e-mail address or phone number, it's because they're available to answer your questions.  Take them up on it!  You'll meet others rights away at the Family-to-Family Connection - enroll now!

Give yourself a break!  There's nothing wrong with asking for assistance when you need it.  Whether it's help with the other kids, or with shopping...or maybe you just need a couple of hours to revitalize by going to dinner or taking a shower or getting a haircut...take friends and family up on their offers to help!

What is a cleft?

The pure and simple answer:  A cleft is a hole or notch in the lip, palate, alveolar ridge or another body part, such as the chin or even the eye. A cleft lip can occur alone or in conjunction with a cleft palate.  Clefts can be unilateral (one side) or bilateral (both sides), complete or incomplete.  These varying degrees will be the deciding factor in considering what type of surgery your child may have and at what intervals. More definitions here.

How did this happen?

It's not what happened, but more accurately...what didn't happen.

During normal development of a fetus, the tissues forming the lip and palate fuse together.  When this normal fusion does not take place, a child is born with a cleft.

Why did this happen to our baby?

Cleft lip and palate in its varying degrees of involvement appear in nearly 1 of every 600 births, making it the most common birth defect in the United States, according to a January 2006 report from the Centers for Disease Control (CDC), and on of the most common birth anomalies worldwide.

While the cleft anomaly can "run in families" or show in conjunction with syndromes (e.g., Pierre Robin Sequence, Crouzon Syndrome, Treacher Collins), most often a cleft shows itself as an "isolated incident".  This means that, at first investigation, there is no family history and no indication of other health problems.

Asians, Hispanics and Native Americans experience a higher percentage of cleft lip and/or palate, while Caucasians and African Americans show fewer incidents.

Some medications, when taken by the mother during pregnancy, have been linked to clefting.  Smoking is another factor.  Furthermore, recent studies have shown a link between clefts and environmental factors such as air pollution.

So...now what?

Love and enjoy your baby!  Above all else...congratulations on your new arrival!  While no one is denying that this is a difficult time in your life, there is also no denying what a blessing you have been given...a beautiful addition to your family!  Your baby needs all the same things that any other baby needs...food, a diaper change, a warm bath, tender care and a close, loving relationship with mom and dad and other family members.  The answers you need will come.  For now, get to know your baby and let your baby get to know you!

Remember that cleft lip and palate are both repairable.  Surgery to repair a cleft lip and palate is more routine than you might think.  Depending on the extent of your child's cleft and the areas affected, treatment may be completed early in life, or could extend into the teenage years...every case is different.  The bottom line...believe that we live in a tremendous time in medical history and that cleft-related treatment and surgery has come a long way, even in the past ten or fifteen years.

Find a cleft team.  The absolute best care your child can receive will come from an interdisciplinary cleft/craniofacial team.  The team approach will ensure your child sees a physician from every specialty commonly required by children with cleft lip and/or palate.  Team members are extremely well-versed in cleft treatment and care.

In some areas, hospital staff will contact a local cleft team upon your baby's blessed arrival.  A team coordinator will either visit you in the hospital and examine your newborn, or will arrange an appointment with the team in the early days of your baby's life.

If you were told during an ultrasound that your baby will be have a cleft, or if you were not referred to a cleft team, let the Cleft Palate Foundation help you locate a Team in your area.  You can also call the CLEFTLINE at (800) 24-CLEFT 24-hours, toll-free.  You can also access their database of cleft/craniofacial teams from links on our website - see our state resource guide for more information.

How will I feed my baby?

While a baby born with a cleft lip may be able to breast- or bottle-feed without issue, an infant with a cleft palate simply does not have the means to generate enough suction to nurse well, or at all, without assistance.

There are several cleft plate nursers available.  The SpecialNeeds™ and Mini-SpecialNeeds™ Feeders (formerly known as the Haberman) and the Mead-Johnson Nurser are probably the most common; however, the Pigeon Feeder is becoming increasingly more popular.  The truth is, whatever works for your baby is what's best.  See our Feeders page for information on these devices.

If your newborn cannot nurse at the breast, consider pumping your breastmilk.  The lactation consultant at the hospital can help; see our Lactation page for more information.

Some teams fit an infant born with a cleft palate with an obturator very early, sometimes as early as just a few days after birth.  The process is very short and is painless for your baby, although he/she may cry when the mold is taken.  An obturator serves as a false palate, allowing the infant to develop necessary feeding skills like sucking and swallowing.  An obturator used in conjunction with a cleft palate nurser can result in a fulfilling feeding experience for both baby and parent.

There are some newborns with clefts who are gavage fed before they are fitted with an obturator.  A flexible tube is fed down the throat or through the nose and into the stomach.  Breastmilk or formula is poured into an attached syringe...then it's all gravity, really.  If this feeding method is required, the nursing staff will show you exactly what to do, so don't worry...they'll make sure you're an expert before they send you home from the hospital!  G-tube and NG-tube feeding is also a possibility if other less invasive methods are not successful.

First and foremost, provide a quiet, comfortable environment for your baby.  Feeding time is a time to cuddle and love and nurture...so enjoy it!

See our Layette page for links to our feeding article reprint.

When will my child's lip be repaired?

As long as your baby is otherwise healthy, feeding well and gaining weight, the cleft team may decide to make an initial lip repair at a very early age, for instance at two or three months.

The cleft team may have specific instructions for you to prepare your little one for surgery.  One concern is that there be no tissue or skin damage at the surgery site.  Keep your baby's fingernails trimmed; you might even consider putting on a pair of those little cotton mittens to prevent any scratches or tears.

Pre-surgical orthodontic treatment is becoming increasingly more popular, but use is limited to team members who have undergone specialized training.  Ask your team if they offer nasoalveolar molding (NAM) or other treatments such as taping or use of the Latham device.  More information on these subjects can be found on the Learn More page.

When a surgery date has been set, you will need to take your baby to a pre-operative (pre-op) visit.  If you're seeing a team at a major medical center, usually you'll see the surgeon and have blood/urine samples taken all in one facility.  However, it is also not unusual to visit the surgeon's office and then need to complete paperwork and lab work at the hospital separately.

As the big day approaches, keep a keen watch for any sign of cold, flu or other infection.  If your child is not healthy on surgery day, the operation will be delayed.

What should I expect on surgery day?

Especially with infants, expect to arrive very early at the hospital.  The reasoning here is that since no food or water will be allowed past midnight, your baby will most likely be very hungry in the morning!  Usually, infants and very young children are scheduled for surgery as early as possible.

An IV will be started in the pre-op staging area and there may be some paperwork to complete.  As the staff prepares your child for surgery, you may become very anxious...and that is normal.  Fear of the unknown can generate anxiety in all of us.

It is best to dissuade friends and family from congregating at the hospital at this early hour.  They will not be allowed bedside, as this can interfere with the pre-op staging.  It may be best if most well-wishers stay home altogether.  While you may appreciate some help at home afterwards, you probably won't feel like socializing much in the surgical waiting room.  Of course, if there is a special member of your family that you would like by your side, invite them to arrive just about the time they will take your child into surgery...they can meet you in the waiting room.

By all means, take some reading material, have breakfast in the cafeteria or make a couple of phone calls to pass the time.  However, if you leave the waiting area, be sure to let someone know where you'll be going within the facility.  Many hospitals offer pagers to contact you if they need you.

How will my child look after lip surgery?

Depending on the extent of the required repair, expect your child to be swollen, a little bloody, and have visible sutures.  Oh...and expect them to be crying and hungry!  Of course, they will be monitored closely, so you may see gadgets here and there hooked up to them, but don't be alarmed...it's all routine.

I've heard that my child's arms will be restrained.  What's that all about?

The healing process can cause tingling and itchiness...and baby's hand will instinctively go right to the bothersome spot.  It is extremely important that your child not pick at sutures or stick anything in their mouth after surgery.  The surgical site must be protected!

Some surgeons prefer that arm restraints be worn by infants and young children following surgery.  They will stretch from mid-upper arm to mid-forearm and perhaps even to the wrist.  Contact information for manufacturers of these restraints, sometimes called "no-nos", can be found on our Resources page.

The doctor says "no sucking" after surgery.  So how is my baby going to eat?

Practicing a new feeding method before surgery is recommended.  After all, after surgery is not the time to be experimenting with new feeding techniques!  Your baby will be hungry and uncomfortable, so if you already have an idea of how you'll manage feeding after surgery, you'll be doing yourself a big favor!

Depending on the age of your child, there are several post-op feeding options.

Syringe feeding can be very messy and frustrating.  By removing the plunger from the syringe set-up and attaching a small flexible tube (like IV tubing) to the end, you can dribble fluids into your infant's mouth.  Simply crimp the end of the tube as you would a garden hose to stop the flow.  Pour breastmilk, formula, juice or water into the syringe.  Then it's all gravity!  When you un-crimp the tube, as long as the syringe is higher than the end of the tube, fluid will flow freely.  Practice crimping the tube and getting the flow down to a science before you point that thing in your baby's mouth...you don't want to allow too much fluid to flow too quickly!

In older babies and toddlers...and even some pre-school age children...the syringe can be used with the plunger to feed traditional baby food and/or anything you can puree up in your blender.  The key here is to make sure all the air is expelled from the syringe before feeding!  (Trust us on this one!)  Load the syringe by retracting the plunger.  Then turn the entire mechanism upside down, allowing the food to settle.  Push up on the plunger to get the air out.  Now you're ready to feed.

If you don't follow the above instructions, chances are you or your child will end up shooting food into their face and hair...and probably everywhere else in a two- or three-foot vicinity.  It really does make for a good laugh, but the clean-up is a drag and the bottom line is...your child is still hungry!

A cleaner and more convenient alternative to syringe feeding is the Soft Sipp post-operative feeder by Zip-N-Squeeze.  Two sizes of tubing are available with the Soft Sipp, allowing for feeding of liquids as well as some thicker foods.

Many children are weaned from their bottles or cleft feeders at a very early age, some as early as just four or five months old.  Practice with a small disposable cup, like a Dixie cup.  You'll be surprised how quickly a hungry baby can adapt to a new feeding solution.  Some surgeons will also allow sippy cups.

For toddlers, school-age children, teens and adults, try Zip-N-Squeeze.  There is no need to suck at all with this product, despite the use of a straw.  With a simple squeeze of the bag, food and drink travel up through the straw without sucking.  This is a great product for toddlers who want to be independent and feed themselves, although you will need to supervise so that they place the straw close to the cheek and not near the surgical site in the case of palate surgery.

The key to sufficient healing is making sure your child has plenty of fluids and a well-balanced diet to they'll have the energy and nutrients to heal quickly.  An empty belly will lead to distress, so it is important to have a couple of feeding alternatives figured out well ahead of the surgery date.

After lip repair, my child's nose looks flat and wide...what happened?

This is common in children with bilateral cleft lip and palate.  While the premaxilla was moved inside the mouth as the lip was closed, you can now see that the columella is very small or even missing.  Additional surgery will remedy that flat and/or wide look.  Sometimes cartilage is taken from behind one of the ears and brought forward to form or enhance the columella.

When will my child's palate be repaired?

Most soft palate repairs are performed between 8 and 12 months of age, although timing may vary.  After this soft tissue repair, small holes may still be present in the hard and/or palates.  These are called fistulae.  Your baby may or may not continue to pass food and/or fluid through the fistulae for several years, although many children learn how to control this.

Later, bone grafting will be performed to close the remaining fistulae as well as repair the alveolar ridge (gumline).  Your team will discuss the exact timing of this procedure with you as the time approaches, usually during the elementary school years.

Why is my child getting repeated ear infections?

An inherent trait in most children with clefts is that the eustachian tubes are not angled normally and/or muscles are not functioning properly or at all.  In other words, fluid cannot flow freely from the middle ear. This can lead to infection after infection.  While fluid in the middle ear can lead to temporary hearing difficulties (that are alleviated by performing a myringotomy and inserting tubes), scar tissue from repeated infections can lead to permanent hearing loss in varying degrees.

Watch for symptoms of ear infection...fever, tugging at the ear, irritability without an apparent outward cause.

As part of your team visit, an audiologist will perform a tympanogram to measure air pressure in the ear canal.  The test will reveal immediately if there is fluid trapped.  The otolaryngologist (ENT) will conduct a full examination to check for infection.

If your baby needs a myringotomy, don't be alarmed.  Generally speaking, your cleft team will recommend performing the procedure in accordance with another surgery, like lip and/or palate repair.

I've noticed my child's speech isn't clear, or sounds very nasal.  What should I do?

Hearing loss can contribute to delayed or unintelligible speech, so it is very important to have a regular audiogram and a tympanogram to rule out hearing problems.  If you're seeing a cleft team, your child's hearing will be monitored every step of the way. 

Your child will also be seen by a team speech and language pathologist (SLP).  Early intervention can prevent the development of bad speech habits.  It is not unusual for children 18 months of age, or even younger, to start speech therapy to prevent or reverse bad speech patterns.  Parents and professionals work together to help the child learn good speech patterns.

However, many children with clefts simply do not have the "equipment" to develop good speech habits and it may be difficult or even impossible for them to produce seemingly simply sounds.

While the lip and palate have been initially repaired, sometimes the soft palate is short and cannot reach to close the gap between the oral cavity and the nasal cavity.  This is known as a velopharyngeal insufficiency (VPI), and can be corrected with a speech prosthetic or, more commonly, a secondary palate repair procedure called a pharyngeal flap.  Your cleft team will monitor your child and advise you of the best remedy.

No matter which option is chosen, speech therapy will be in order both before and after the fix.  Free and/or low-cost early intervention services are available throughout the country for children ages birth to three years old.  See our state resource guide for links to services in your area.

Pre-school and school-aged children are eligible for speech therapy from local schools free of charge through early childhood education offices.  Call your school district office for more information.  Your cleft team will also recommend a private speech/language pathologist.  Your insurance should cover at the very least a minimum number of visits per year.  Call your member services department to check your benefits.

Kids can be cruel.  How can I make my child's transition to pre-school or kindergarten as smooth as possible?

While it's true that "kids can be cruel", you'll be surprised at how easily youngsters adapt to their new surroundings and make new friends.  The most important thing to remember is to teach your child is that everyone is different in some way or another!  When children feel good about themselves, they are less likely to tease others or take teasing directed toward them to heart.

A third- or fourth-grader may start to experience some negative attention, but your child will be very educated about his cleft by this age.  He will be able to explain to other kids that he was "born like that" and that he has had surgery to repair the cleft .  It may also be a good idea to talk to your child's teacher at the beginning of the school year.  Offering medical explanations in advance will help the teacher keep an ear open for any abusive attention coming from classmates and playmates.

But...can we be blunt?

We know from experience that this is all just so much to take in right now.  When your baby is so cuddly and warm in your arms, you can barely envision the first day of school, let alone any social interactions that will come with that.

Our best, heart-felt advice?

Don't worry about things that may never even happen.

Enjoy your child!  Instill self-confidence!  Congratulate his accomplishments and see him learn from his mistakes!  Raise a child who was born with a cleft just as you would a child without one...with care and guidance and fun and love!

If and when an incident occurs...

Just like any other relationship your child may have, sometimes there are squabbles.  And most times, things blow over and everyone's friends again the very next day.  Don't feel compelled to get in the middle of every battle.  Trust your child to know who his true friends are, and who is probably just trouble.

Of course, if a situation seems as if it will enter a more difficult stage, you may need to step in.  Use good judgment.  Sometimes it simply takes a little education!

What can we do for you?

We know there are going to be many, many more questions along the way.  These are just a few of the most common questions asked by new parents of babies with clefts.

Below are some links to get you started on your journey.  If you have a question you would like us to answer here, visit us at the Family-to-Family Connection!

We're here for you...

QuickLinks

A Timeline For Care
A guideline for your child's early years

Repair of Cleft Lip and Palate - A Parent's Guide
A tremendously thorough overview!

Craniofacial Disorders: The Team Approach to Care
What each Team Specialist offers your child

Your New Arrival

Oral-Facial Clefts
From the March of Dimes
Caring For A Newborn With Oral Clefting
Special considerations for parents and newborns
Cleft Lip and Palate
A quick overview and great graphics
Cleft Lip and Palate Deformities
Graphics and terminology
What To Expect
Includes a treatment guideline
Parents' Guide To Caring For A Child With Cleft Lip or Cleft Palate
From UC Davis
Cleft Lip and Palate Tutorial
From the University of Virginia
A Quick Statement of Facts
From Children's Hospital Los Angeles

Stress and Family Issues

Dealing With Emotional and Social Issues
Coping With Facial Differences
When Your Baby Has A Birth Defect
Acknowledging Your Emotions
Cleft Lip and Palate:  Family Reactions and Emotions
From Children's Healthcare of Atlanta
The Sibling Support Project
Dedicated to the interests of siblings of people with special health care needs
A Little Inspiration
A Cleft Advocate page

Feeding Your Child Born with a Cleft

Mom's Milk Matters - Breastfeeding a Baby With Cleft Lip or Cleft Palate
Article quotes the Cleft Palate Foundation and cleftAdvocate members
Lactation Information from Cleft Advocate!
Can you breastfeed?  Will you pump breastmilk?  Get answers here!
The Controversial Issue of Breast-feeding Cleft-affected Infants
By Jacalyn Miller (or e-mail baconsmith@shaw.ca for information)
Breastfeeding A Baby With Cleft Lip and Palate
From La Leche League International
Feeding the Baby with Cleft Lip/Palate
From St. John's Hospital
The Importance of Early Referral for Feeding Management
The Newborn with Cleft Lip and Palate
Feeding of the Newborn with Cleft Lip and Palate
From Doernbecher Children's Hospital
Feeding Your Newborn
From the University of Florida
Learn More - Feeding Issues
A Cleft Advocate Page

Lip Repair

Some Before and After Pictures
From Children's Hospital Los Angeles
Facts About Cleft Lip Repair - Preparing For Hospitalization
An generic overview from University of Texas Medical Branch
Cleft Lip Repair - Home Care Instructions
An generic overview from University of Texas Medical Branch
Preparing for Cleft Lip and/or Palate Surgery
From UC Davis

Palate Repair

Facts About Cleft Palate Repair - Preparing For Hospitalization
An generic overview from University of Texas Medical Branch
Cleft Palate Repair - Home Care Instructions
An generic overview from University of Texas Medical Branch

Speech and Language Development

Speech Development
From The Cleft Palate Foundation

Secondary Surgeries

Bone Grafting the Cleft Maxilla
A brief overview including goals of the procedure
Final Operations For The Older Child Born With Cleft Lip/Palate
Written for Prescription Parents


Get more in-depth information in all areas
at our Learn More page!
© cleftAdvocate
All Rights Reserved
Disclaimer
This cleftAdvocate page was last updated March 25, 2014
We subscribe to the HONcode principles of The Health On Net Foundation
Meet other parents, ask questions, get answers...
Join us at cleftAdvocate's Family-To-Family Connection!
Cleft Q&A
cleftAdvocate
a program of ameriface