The first thing that any parent of a child diagnosed with (or born with) cleft palate should know is that plastic surgeons have been successfully repairing craniofacial clefts for years.
The medical procedures are well-understood, the field well-regulated, and the technology continues to improve. Indeed, in the hands of a skilled plastic surgeon, with a team of caring professionals supporting your child’s healing and growth, the functional and cosmetic results of are most often superb.
The goal of your plastic surgeon will be to reduce the number of surgeries your child must endure, to pursue minimally-invasive solutions, and to consider not just the immediate results of care, but the growth and well-being of your child for many happy years to come.
“When I meet with parents, I always spend as much time as needed to explain how did this happen, what will happen next, and what to expect in the future…”
Even so, a diagnosis cleft lip—with or without a cleft palate—is a serious challenge for parents, requiring participatory care. It is important for parents to educate themselves, to commit themselves to following doctors’ instructions, and to recognize that while we aim for perfection, the results of surgery will be modified by growth over time.
A Team Approach
No parent wants to hear that their child is going to be born with special challenges, but it is important to know that we have specialized teams are in place here in New Orleans to help meet those challenges for families in Louisiana and the Gulf Coast.
The key, as it is so often, is teamwork: once you have a pre-natal diagnosis, you should insist on meeting all of the specialists who will work together to heal and help your child grow. These should include a plastic surgeon, a geneticist, an ENT, a pediatric dentist, a speech therapist, and more…
If that seems like a lot, don’t worry. The American Cleft Palate-Craniofacial Association (ACPA) has a certification process to ensure that all of the sub-specialties are represented by qualified, specially-trained professionals—a nurse coordinator among them, to manage the process of healing your baby.
The first step, then, is to get the team in place:
At NOLA Craniofacial, we strongly urge parents with a diagnosis of cleft lip, cleft palate, or combined cleft lip and palate to visit the American Cleft Palate-Craniofacial Association’s team finder in order to ensure that the plastic surgeon you choose is part of a certified ACPA team.
Diagnosis of Cleft Lip and Palate
Unfortunately, it is often the case that a diagnosis of cleft lip, with or without a cleft palate arrives with the infant at birth. Without prenatal screening, it is bound to be a shock, but even the very best ultrasound sometimes misses the diagnosis of cleft lip, and there is no good way to know whether or not the cleft will extend to the palate until the child is born.
Once there is a diagnosis, it is absolutely imperative that the mother is seen and evaluated before delivery (if possible) by representatives of a certified team. The next step—using resources provided or the many provided online by the good people at the ACPA—is to educate yourself.
Every cleft presents its own challenges. If the lip is involved: as we look to repair the cleft and heal your baby, cosmetic symmetry is important. In the case of a bilateral cleft, the child’s nose (both appearance and function) is also of concern.
What is a cleft palate?
Quite simply put: we are talking about the roof of your child’s mouth.
There, we find two palates, primary and secondary. The anterior bony part of the palate involves the teeth, whereas the secondary roof of the mouth and “soft” palate is important to speech. A cleft may involve either (primary or secondary) or both and may be partial or complete. Additionally, a cleft may be unilateral—occurring on just one side of the mouth—or bilateral—and may or may not also involve the upper lip.
Feeding Your Child
Most children born with clefts of the lip or palate have trouble creating suction in order to nurse, as such, the first of many challenges will be feeding your baby.
The feeding techniques are simple—and there are specialized products such as squeezable bottles that make the process even easier. Everything depends on your baby’s particular needs of course, and a good, dedicated nurse will be able to send you home feeling confident.
Those “particular needs” will be determined by the nature and severity of the child’s cleft.
Download a simple .pdf for feeding instructions.
Cleft Palate and Speech
When a baby is born with a craniofacial cleft, the parents’ concerns are likely to be focused on the child’s appearance. If the palate is involved, there are additional, functional concerns as well, especially related to speech.
A plastic surgeon will perform surgery to repair the musculature of the soft palate. Your child will be anesthetized throughout, and should not experience any pain.
Yet because your child will not begin speaking until 10 or 12 months, and because our skill with languages grows as we grow–the principal organ of speech is the brain after all—we cannot know if the repair has succeeded until long after the surgery is completed.
This is why choosing an ACPA-certified team is so important. An ACPA-certified surgeon knows what to look and listen for as your child begins to speak, though in most every case speech therapy is likely to be beneficial.
Indeed, children born with cleft palates often experience associated speech disorders.
Among the most common is a disorder known as velopharyngeal insufficiency (VPI). In children with VPI, because the palate (its musculature) is not functioning properly, air is allowed to escape through the nose and the child’s speech may be hyper-nasal. A good speech therapist will work with your child to alleviate these symptoms.
Cleft Lip and Palate Timeline
A child born with a cleft lip with or without cleft palate will need to be seen by an ACPA-certified plastic surgeon as early as possible, as early as 2 to 3 days of age.
This is absolutely critical for your child’s future. A newborn still retains maternal estrogen that makes his or her bones more malleable—and therefore more responsive to care. The sooner a surgeon sees your child, the better the results of pre-surgical molding are likely to be.
Pre- and Post-Natal Care
The first step is choosing a team, educating yourself, and preparing to feed your child once he or she is able to leave the hospital. Because your child will require multiple surgeries, it is very important to be comfortable with the team and your surgeon. Any hospital should be able to recommend a team, but the ACPA team finder is an excellent resource as well.
Surgery to Repair Cleft Lip
If your child has a cleft lip as well as a cleft palate, your surgeon will recommend pre-surgical measures to reduce scarring. Surgery to repair cleft lip is usually performed at 3 to 4 months of age, depending on the nature and severity of the cleft. Click here to read more about cleft lip.
Surgery to Repair Cleft Palate at 10 to 12 Months
Your surgeon is likely to recommend surgery to repair your child’s palate at 10 to 12 months of age. During the repair, the team’s ENT will insert pressure equalization (PE) tubes via the ear canal. (The muscles of the soft palate also control the drainage of the inner ear.)
Not all children who have cleft palate will have problems with their hearing, but this five-minute additional procedure is important in order to ensure the proper growth and development of the inner ear.
Your team is gathered to support the healthy growth of your child, and you will see members of this team at least once a year until your child has finished growing. While the surgical results are likely to be stable over time, follow-up care allows us to monitor the success of those results in the context of your child’s growth.
Regular dental checkups and cleanings should also be observed.
Your child will most likely require ongoing speech therapy, and it is best to start early, even before they start speaking and most certainly by their second birthday. There are programs available through most public school systems and supplementary public programs (even if the family does not qualify for Medicaid).
Five Years of Age
At five years of age we generally reevaluate the results of surgery to ensure that the results are stable as your child heads off to school. Occasionally, corrective speech surgery may be required, and in the case of children born with combined cleft lip and palate, any revisions would be performed at this time.
7 to 8 Years of Age
As every child is different, so is every cleft unique. Some children will require an orthodontist—and braces—and others will not. Malpositioned teeth are common in kids born with cleft palate. Often, their teeth do not fit well together. With that said, the decision to wear braces is a personal one, of course, and will depend on the child, the family, and the severity of any dental issues.
9 to 10 Years of Age
In the case of a cleft of the primary—or bony—palate, the child may need additional surgery to add bone to the gum ridge. This is known as an “alveolar bone graft.” We perform this surgery as the child begins to lose his or her baby teeth, in order to ensure that the permanent teeth develop properly. An overnight stay in the hospital is required, as your child will be placed under general anesthesia during the procedure.
Adolescence and Beyond
Once your child has his or her permanent teeth, any additional orthodontic treatment may begin. Later in their teen years, if speech therapy has proven insufficient, your surgeon may recommend (and the family and child decide upon) surgical intervention in the form of corrective jaw surgery. And in children who have a deviated septum, completion rhinoplasty is recommended after graduation from high school.