Cleft lip and palate are common birth defects in infants, often occurring together. The upper lip and roof (palate) of the mouth doesn't close forming a gap that may be very small or very large, affecting the entire lip and palate. Cleft lip and palate may cause difficulties with feeding and speech. In addition, cleft lip and palate may occur with gastroesophageal reflux, making feeding even more challenging.
An infant with cleft lip/palate needs special medical care from a team of doctors including: pediatrics, surgery and otolaryngology (also called ENT or Ears, Nose and Throat). A speech/language pathologist may assist with feeding issues since coordinating sucking, swallowing and breathing may be difficult. The specialist will assist with the special positioning, bottles and nipples to improve feeding. One or more surgeries will repair the birth defects. After the surgical repair of the cleft lip and palate, feeding will improve.
I spoke with speech/ language pathologist, Pamela Tyler, MS SLP-CCC about the special needs of a baby with both cleft lip/palate and reflux.
Reflux Mom: What is the connection between cleft lip/palate and reflux?
Pamela: Feeding issues associated with cleft lip/palate mimic reflux as infants with clefts may cry while feeding, refuse to feed and regurgitate milk through the nose. Infants with cleft palate exhibit nasal regurgitation when feeding because the damaged palate allows feedings to pass from the mouth and out the nose. Nasal regurgitation is different from reflux in that reflux results from failure of the opening between the esophagus and stomach to close, causing stomach contents to rise up the esophagus and out the mouth or nose.
However, infants with cleft lip/palate may also have reflux. Infants with cleft lip/palate may also have other conditions which tend to have a higher incidence of reflux.
Reflux Mom: What does a parent or caregiver need to know about feeding a baby with cleft lip/palate and reflux?
Pamela: Feeding a baby with a cleft can be frustrating since feedings can take a long time and require a lot of patience. It may take a lot of trial and error to find the right bottle/nipple and feeding position that works best for the baby.
In addition, parents often feel pressure to have their babies gain weight in order to have cleft repair surgery. These behaviors can also lead to a stressed feeding relationship that can prolong feeding issues beyond repair surgery.
Reflux Mom: What is your best advice for parents?
Pamela: Having a team of specialists with experience in treating infants with clefts is important. Many children's hospitals throughout the country have cleft palate or craniofacial clinics that offer comprehensive services. The team of specialists at these clinics may include: oral surgeons, otolaryngologists, plastic surgeons, dentists, orthodontists, speech/language pathologists, and audiologists.
A speech language pathologist can assist with feeding difficulties by demonstrating positions for optimal feeding and special bottle/nipples. If you are breastfeeding, you will need the assistance of an experienced lactation specialist. In addition, a pediatric gastroenterologist can assist with nutritional issues and reflux treatment.
Most of all, you and your family will need support and nurturing too as you deal with the numerous doctors appointments and surgeries. It will be helpful to have extra assistance at home. Finding other families with similar experiences will give you the opportunity to share your concerns and ask questions from someone who has been in the same situation.