Cleft Lip & Palate Posting

Tomorrow I will be at the 36 week mark!  The time is flying by like crazy, and I am just in shock that he will be here so soon.  Expecting a baby soon around the holidays makes for a crazier than normal Christmas season, but at the same time- very exciting!

So, one thing that I haven't written about on here is the fact that Parker is going to be born with a cleft lip and cleft palate.  At my 20 week anatomy ultrasound scan, we found out about this.  I am minimizing a great deal on here what an emotional roller coaster that was and still at times continues to be, only because we have had our time of "grieving" an abnormality with our child, but also because over the last 4 months, God has really helped us to have a better perspective on the situation and move forward in how we will handle it.

At P's 29 week scan- you can see the cleft on his left lip.
It's the darker line from his lip border reaching
 up towards his nose.

One of the things that was helpful for me was to read information not only from clinical standpoints, but also a few blogs that people in our situation used to document and educate others on the challenges and surgical repair processes of their own children who had clefts.  I hope that maybe someone can be encouraged as we do the same with Parker over at least the next year!

What is cleft lip/cleft palate? 














A cleft is a separation in the lip or roof of the mouth (palate).  They can occur in anyone, but are twice as common in boys.  Approximately 1 in 600 babies born in the U.S. has a type of cleft.  Clefts are the fourth most common birth defect in the U.S.

Incomplete Cleft Palate

Unilateral Complete Cleft Lip & Palate
(What Parker has)

Bilateral Complete Cleft Lip & Palate

What causes it?
Exact cause is unknown.  For most cases, no single factor can be identified.  Some can be associated with syndromes or birth disorders.  Between 85-90% of individuals with a cleft have no other physical problems, and when it is "isolated" like this, the cleft is believed to result from an interaction between genes and the environment.  From all of our tests and extra ultrasounds, it appears that Parker's cleft is an isolated problem, meaning that there is no suspicion of a syndrome, and all of his other anatomical markers are within the norm.

Again, the cause isn't fully known, but the most important thing to remember is that it is NOT that you, the parent, did something wrong- it is not your fault.  In the first 10 weeks of life, the left and right sides of the face and roof of the mouth join together.  if they don't join correctly, an opening in either the lip or the roof of the mouth can result (cleft).

What are some issues to expect?
One of the biggest issues is with feeding.  Depending on the severity of the palate involvement, babies may or may not be able to breastfeed.  Regular bottles/nipples can also be challenging due to the baby's inability to form a good seal/suction.  There are many options for specialty nipples for bottles, and a lactation specialist can help in offering suggestions for feeding difficulties.

Hearing can be an issue, as cleft babies have higher risk of ear infections.  Most require tubes to be inserted by an ENT to drain fluid and prevent hearing loss.  Teeth can be affected with palate involvement, and orthodontics is usually a need.  Speech problems can also be common, and often it is necessary to work with a speech therapist starting as early as about 6 months of age.

How is it repaired?
Surgical repair is almost always needed to correct the cleft.  Virtually all children born with cleft lips or palate who receive appropriate care go on to lead normal, happy, healthy, and productive lives!  Each individual is unique, and their situations and surgical plans will all differ to some degree.

Repair to the lip is typically done first per standards of care and is done at about 10 weeks of life or later.The lip can be repaired in a single step or in multiple procedures.

Repair of the palate begins after about 6 months of age.  Depending on the severity and complexity of the palate, it can be done in one surgery, or can be done over a period of years in developmental stages.  The primary goal of repairing the palate is to achieve acceptable speech.

It is also helpful to be seen by a Cleft Lip and Palate Team of specialists available in many larger areas. Besides surgical closing of the clefts, these individuals may need additional help with feeding, teeth, speech, hearing, and social/psychological development over time.


What type of specialists participate on the treatment team?
-Audologist (assesses hearing, which can be affected with clefts)
-Surgeon (often a plastic surgeon, an oral/maxillofacial surgeon, craniofacial surgeon, etc)
-Pediatric dentist (if prosthetic pieces are needed for the mouth)
-Orthodontist (straightens teeth and aligns the jaws)
-Geneticist (screening for syndromes, counseling parents for genetic implications)
-Lactation specialists (help with feeding problems and alternative feeding options)
-ENT (Ear, Nose, Throat physician for issues affected in these areas)
-Pediatrician (monitors overall health and development)
-Psychologist (support family and assess any adjustment problems)

-Speech-Language Pathologist (assesses speech and feeding problems)
-Other specialists (treat specific aspects of complex craniofacial anomalies)

A dear friend of mine ordered me some fantastic educational references from the Cleft Palate Foundation. If you or someone you know is expecting a child with this condition, the contact information is:

Cleft Palate Foundation
1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514
800.24.CLEFT (242.5338)
www.cleftline.org, info@cleftline.org

The facts I've shared on this posting were found in their resources.

Just for fun- a few well-known people born with cleft lips and/or palates:

Tom Brokaw- News Anchor

Cheech Marin- Actor

Peyton Manning- NFL Quarterback