This week I was at the Center for Excellence in Disabilities for my dietetic internship. The dietitian at the CED sees children with various disabilities and diagnoses that can affect nutritional status, growth, and feeding/mealtime routine. Examples of diagnoses include cerebral palsy, autism, cleft lip/palate, Treacher Collins syndrome, stickler syndrome, Pierre Robin Sequence, children with developmental delays, down syndrome, Prader-Willi syndrome, and more.
Although I didn’t see any patients with cleft lip/palate that week, I was able to read quite a bit about it and watch a few educational videos about how to feed infants with cleft lip/palate, and I thought I’d share a bit what I learned!
Cleft lip or palate both occur in the first 10 weeks gestation. In these first 10 weeks, the left and right sides of the face and the roof of the mouth join together. When these sides fail to join correctly, it results in an opening of the lip or the roof of the mouth. These can be “unilateral” – just on the right or left side of the face or palate — or “bilateral” — on both sides of the face. Cleft lip/palate can occur separately or together, and are present in 1 in 700-800 births.
Children born with cleft lip or cleft palate or both, will almost always need surgery to correct this condition. Cleft lip can be repaired in the first 3 months of a child’s life, and cleft palate can be repaired after the first year of life, at about 12-18 months of age. Surgery for cleft lip generally follows the “rule of 10” : The child must weigh at least 10 pounds, have a hemoglobin of at least 10, and be at least 10 weeks old.
Besides surgery to close the opening in the lip or palate, children may also need to see a team of professionals in order to get help with their eating, teeth, speech, ears and hearing (fluid buildup can lead to ear infections and hearing problems), and social/psychological development as the years go by. A team of professionals may include ENTs, pediatricians, orthodontists, oral and maxillofacial surgeons, plastic surgeons, prosthodontists, pediatric dentists, speech pathologists, audiologists, nurses, genetic counselors, psychologists, social workers, and dietitians.
Nutritionally, children born with cleft lip/palate at most at nutritional risk at 0-4 months of age. It can be difficult for a child to be able to breastfeed, especially in those with cleft palate. Formula can spurt out the child’s nose, and the child can have difficulty forming a seal around a baby bottle and having proper suction. These difficulties with feeding can lead to failure to thrive if not taken care of.
There are tips and tools that parents can use with their infants with cleft lip/palate to make sure their child is getting enough calories. Holding the child in an upright/45 degree angle position can help limit the amount of formula that enters the nasal passage and comes out the nose. Special baby bottles that are squeezable are a great aid for infants that need some extra help. Formula can be squeezed into the baby’s mouth via a “pulse squeeze” pattern. Babies with cleft lip/palate will also need to be burped more often because they swallow more air during feedings. In more serious cases, such as infants with exceptionally wide cleft palates, a G tube may be needed (feeding tube that delivers nutrition directly into the stomach).
With the help of special feeders and appropriate care via a team of medical professionals, the child should grow normally and go on to lead healthy, happy, productive lives.