Cleft Lip and Palate
Giving Birth to a Baby with a Cleft Lip and Palate
I have worked with babies with cleft lip and palate for a majority of my professional career. Over time, I have developed wisdom in dealing with this medical and dental issue. I want to share what I have learned. These are the 5 most important things for a family with a new diagnosis of cleft lip and/or cleft palate to understand.
Some clefts are related to specific medications, smoking or excess alcohol consumption, but a majority are new genetic issues. This means the parents did not do anything wrong, and they should not look back with any regrets about the pregnancy. Sometimes things just happen and there is no explainable reason why they happen. Watching new parents beat themselves up about things that they could have done differently which may have prevented the cleft does not make the situation better. Child birth is both the most scary and most exciting time of a young couples lives. Nobody plans to have a child with special needs. Expect to have some down days, and let yourself experience the full range of emotions. Do not be afraid to ask for help. Know that over time a majority of parents develop coping strategies that are very effective.
A child with a cleft lip and or cleft palate is a healthy child with a cosmetic issue that can be fixed. These issues are not like neurological, cardiac, liver, or lung issues that often have no cure. Cleft lip and palate issues are treatable with cosmetic surgery, speech therapy, cosmetic dentistry and orthodontics. As a pediatric dentist, I like to remind parents that they are speaking with the dentist and not a neurosurgeon or oncologist. These are good issues to have as they can be resolved.
When children are born with a cleft, they are not going to be able to nurse from the breast of the mother. I have been involved with the treatment of thousands of cleft kids, and I have only heard one story of a child with a cleft being able to nurse directly from the breast of his mother. And I never witnessed that determined mother nurse her child. The Parents need to select a center for Craniofacial disorders before birth or as soon after birth as possible. An experienced occupational and feeding therapist can help with any feeding issues that arise. The child may need a specialized type of bottle. Many times the birth hospital will not have the necessary resources. The child may have to be transfered to a Children’s Hospital. Feeding issues need to be addressed immediately so corrective surgery is not delayed.
When the baby is young, it is important to keep the tissue in the are of the cleft clean. Each time you change the diaper of the baby, cleft care should be done. After changing the diaper, wash your hands before going to the other end. Use a long handle cotton swab and a water based lubricant like ky jelly to clean the cleft tissues. Do not let scabs or buggers build up on the lip. The better quality of the tissue and the more healthy the tissue the surgeon has to work with, the better the result of the repair. Learn to roll the cotton swab with ky jelly over the lip and alveolar ridge. this will keep the tissue clean and make sure it is ideas shape for surgery
Depending on what cleft centers you have access to, you may be offered or pushed toward a pre-surgical appliance. Two different kinds of appliances are currently used. Significant controversy exists in the literature about which one is better, and in my experienced opinion, one size does not fit all. There are specific times and circumstances when different appliances help with different problems. The goal of all of these appliances is to normalize anatomy before surgery. Orthodontic appliances are used to reposition the lips, bones, and nose tissues. Restoring the anatomy to a more normal position makes the surgery easier and often gets superior esthetic results.
Cleft care is definitely a marathon and not a sprint. Different issues need to be treated at different times. We cannot program surgery to grow a specific way so revisions and touch up surgeries will have to be done. Dental and Orthodontic treatment will be more involved than care for the average child. Speech therapy will have to be done. If you have a choice, I would choose the providers with the most experience at a center with high volume.