Fetal cleft lip and palate
Fetal cleft lip and palate are congenital abnormalities (an abnormality present at birth) caused by a failure in facial development during pregnancy. Cleft lip is formed in the upper lip as either a small gap or dent in the lip and can continue into the nose. Cleft palate is a condition in which the two plates of the skull that form the hard palate (roof of the mouth) are not completely joined. In most cases, when cleft palate is found, cleft lip is present as well. Although cleft abnormalities occur in approximately 1 in every 700 births, they can be treated with surgery shortly after birth with highly successful results. The recurrence rate for parents having a second child with this deformity is quite low — approximately a 3 - 5% chance.
Diagnosis
The abnormalities are diagnosed through ultrasound (sonogram) when an asymmetry between the right and left nostril or a gap along the gumline appears. Evaluation of the craniofacial structure is part of the routine ultrasound examination done by many obstetricians as part of their routine prenatal care around the 20th week of pregnancy.
Preparation
After a fetus is diagnosed with cleft lip and/or palate, the hospital's surgeons and nurses counsel parents about what to expect when their baby is born and reassure them that it is correctable after birth. One of the major obstacles parents find is that their baby is not able to nurse at the breast or use regular bottles, so the staff members focus on educating parents about the differences that they need to be aware of to breast feed or bottle feed their baby.
Parents are given special bottles designed to easily feed their baby and instructed on how to use them, so they are prepared when the baby is born. If a mother wishes to breast feed her baby, the baby may need supplemental bottles of pumped breast milk after some feedings until the infant is bigger and stronger. Sometimes the baby will not nurse long enough to reach the milk at the end of the feeding, which is the milk that has the highest concentration of fat and is needed for the baby to gain weight. For this reason, the mother may need to pump her milk after each nursing and supplement the other feedings.
The hospital offers the services of an entire cleft lip and palate team, which consists of physicians and staff in the following specialties: ear, nose and throat; dentistry; orthodontistry; plastic surgery; and speech. The parents return for an appointment as soon as the baby is born for detailed examination and to receive further instruction on how to feed their child, since feeding is easier to teach after the baby is present.
Treatment for cleft palate
If the baby has a cleft palate, he is immediately fitted for an intra-oral device similar to a retainer to block the hole in the roof of their mouth. This is a temporary solution until the surgery to repair the palate can be performed. It allows better feeding and helps direct proper growth of the roof of the mouth. When the baby is around nine months of age, the surgeons schedule surgery to correct the cleft palate, if present, by closing the hole in the roof of the mouth.
Treatment for cleft lip
If the baby has a cleft lip, the surgery to close the gap in the lip and nostril is usually performed around three months of age. This surgery often corrects the obvious malformations on the outside of the face. The surgeons discuss these surgeries with the parents beforehand, explaining how it is performed and showing them illustrations of the procedure. The major repairs of both clefts are usually completed by the baby's first birthday.
Long-term outlook
Due to a newborn's outstanding healing abilities, the results of the surgery are excellent both aesthetically and functionally. Children born with this condition have an outstanding quality of life and a normal life expectancy.
Frequently asked questions
How are speech problems prevented or minimized for babies born with clefts?
- By maintaining normal hearing with scheduled ear exams and — if advised by the ear, nose and throat specialists — having the specialists place ventilation tubes to prevent fluid accumulation in the middle ear.
- By completing major structural repairs by baby's first birthday, the child has the best chance to learn to speak well and on time.
- By having serial evaluations by speech pathologists to identify speech developmental milestones as they are achieved; early therapy can be started if necessary.
Should I meet with every member of the cleft care team before delivery and/or should we meet with them at every visit?
- No, the plastic surgeon is generally the entry to the cleft care team. Children have different needs from the team members based on the type of cleft and the age of the child. The plastic surgeon generally serves as the central cog in the team. At periodic times in the child's care, it will be appropriate to have the entire team see the child together. Those appointments tend happen once in infancy, early toddler years, just before school, as the child starts losing baby teeth and as a teenager.
What are the chances that my baby born with a cleft will have a child with a cleft?
- If clefts do not run in your family and no other developmental differences are present in your child, the chance that each child that your baby later has will have a cleft is roughly 4% (ranging from 3-6% depending on type of cleft).
Do I need a special pediatrician to care for my child with a cleft?
- No, the doctors here are happy and comfortable to work with your regular local pediatrician and provide guidance for any rare issues that might arise. The doctors here will care for the cleft and your local pediatrician will provide all the regular pediatric care that all children need growing up.
Can I plan to use regular daycare for my baby?
- Every daycare center is different and every child is unique. While it is usually impossible to make 100% set plans before the birth and care plan is established, it is highly useful to meet with potential childcare providers to discuss your growing family's needs and medical situation. This will prevent disappointments and will ensure the best outcome.
If my baby's cleft does not involve the palate, will I be able to nurse from the breast?
- Usually, if the hard and soft palates are intact, babies with facial clefts are able to produce enough suction to nurse effectively from the breast.
Do you encourage pumping and bottle-feeding breast milk for cleft babies?
- YES! Best surgical outcomes are achieved with babies that are ‘thriving' nutritionally, and we feel breast milk is the ideal diet. Because it must be provided in adequate amounts, we recommend pumping and feeding it by assisted bottle when the cleft involves the palate until the palate is repaired. Occasionally we recommend bottle supplementation with formula when the breast milk alone is not supplied in quantities sufficient to make baby thrive.
If I have a fetal consultation at your hospital must I have my baby's care there?
From my ultrasound images will you be able to tell what my baby's cleft will look like?
- The plastic surgeons will show parents-to-be serial pictures of cleft cases that they have previously corrected similar in degree and location to the unborn baby's, if that can be seen on the ultrasound images. That is why we collect ultrasound images and reports prior to the consultation visit.
How long do the consultations take?
- You should plan to spend at least 30 minutes speaking with the doctor.
May I bring family, other children and friends to the consultation?
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While children are welcome if they are healthy and have had all their required vaccinations, many parents-to-be find them a major distraction from the serious discussion at hand, so we don't recommend that you bring them. We suggest that you limit your other attendees to grandparents-to-be or individuals who will be supporting the mother during labor and delivery and the early care of the infant.
Do all plastic surgeons use the same timetables and procedures to correct clefts?
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No. There are variations in both timetables and techniques for cleft repair around the country, and that is one reason that we recommend fetal consultations to understand what we do, why we do it, and when we do it.
Can my baby with a facial cleft live a normal happy life?
- The vast majority of children born with isolated clefts (meaning ‘nothing else is wrong', as is the case for most clefts) lead very normal happy and healthy lives.
Where can I read more about facial clefts? If I wanted to talk to a family who is raising or has raised a child with a cleft, could this be arranged?
- Yes, the hospital has the “ParentWISE” program that usually is able to do just that.
Are babies with facial clefts in pain before they are born?
Are my other children who were born without clefts at increased risk of having children of their own with clefts?
- Yes. The doctors will discuss with you the approximate risks for your other children's situations.
Is the risk of facial cleft the same the world over?
- No, each ethnic group has its own risk, and this risk varies widely around the world. Environmental factors also play a role in the development of clefts. The plastic surgeon can discuss what your family's risks are based on your ethnicity.