Caring for children with swallowing disorders

About swallowing disorders

Swallowing disorders, or dysphagia, are a type of feeding disorder in which the child has physical difficulty swallowing. Swallowing is more complex than you might think: your tongue, mouth and throat muscles make more than a dozen different movements to swallow.

Swallowing involves three stages that are controlled by nerves that connect the digestive tract to the brain:

Oral preparation stage - Food is chewed and moistened by saliva. This phase is voluntary: We have control over chewing and beginning to swallow.

Pharyngeal stage - Food enters the pharynx (throat). A flap called the epiglottis closes off the passage to the windpipe so food cannot get into the lungs. The muscles in the throat relax. Food and liquid are quickly passed down the pharynx (throat) into the esophagus. The epiglottis opens again so we can breathe. This phase starts under voluntary control but then becomes an involuntary phase that we cannot consciously control.

Esophageal stage - Liquids fall through the esophagus into the stomach by gravity. Muscles in the esophagus push food toward the stomach in wave-like movements known as peristalsis. A muscular band between the end of the esophagus and the upper portion of the esophagus (known as the lower esophageal sphincter) relaxes in response to swallowing, allowing food and liquids to enter the stomach. The events in this phase are involuntary.

A problem with any part of this process can make it difficult or impossible for your child to swallow food and liquids.

What causes swallowing disorders?

Any condition that causes problems with the nerves or muscles of the throat and esophagus can cause problems with swallowing. The problem could stem from a structural defect — such as cleft lip or cleft palate, tracheosophageal fistula and esophageal atresia  — or develop as the result of a chronic condition such as GERD, esophageal achalasia or eosinophilic esophagitis.

How often do swallowing disorders occur?

Between 25 to 45 percent of typically developing children experience feeding and swallowing problems, though the prevalence is much higher (up to 80 percent) for children with other medical conditions.

How do swallowing disorders develop?

It all depends on the underlying condition. There could be an anomaly in the brain center that controls swallowing, poor tone of oral-motor muscles, or inflammation or narrowing in your child’s esophagus. Swallowing problems can start at birth but may become more apparent once your child starts on solid food. Some conditions that cause swallowing problems, such as esophageal achalasia and eosinophilic esophagitis, can come on suddenly at any age.

What are the symptoms of swallowing disorders?

Symptoms vary and may not always be obvious. But the most common symptoms of swallowing disorders include:

• Eating slowly
• Trying to swallow a single mouthful of food several times
• Difficulty coordinating sucking and swallowing
• Gagging during feeding
• Drooling
• A feeling that food or liquids are sticking in the throat or esophagus or that there is a lump in these areas
• Discomfort in the throat or chest
• Congestion in the chest after eating or drinking
• Coughing or choking when eating or drinking (or very soon afterwards)
• Wet or raspy sounding voice during or after eating
• Tiredness or shortness of breath while eating or drinking\
• Frequent respiratory infections
• Color change during feeding, such as becoming blue or pale
• Spitting up or vomiting frequently
• Food or liquids coming out of the nose during or after a feeding
• Frequent sneezing after eating
• Weight loss

Who is at risk of developing this condition?

Children who have conditions that affect the throat or esophagus — including cleft lip or cleft palate, tracheosophageal fistula and esophageal atresia, gastroesophageal reflux disease, esophageal achalasia and eosinophilic esophagitis — are more likely to experience swallowing difficulties. Children who were born prematurely or who have been hospitalized for a long time (especially those who have been on a ventilator or had a tracheostomy) are also at a higher risk of developing a swallowing problem.

Why are swallowing disorders a concern?

Difficulty swallowing can cause a child to aspirate food or drink into the lungs, which can cause pneumonia or other serious lung conditions. These children usually have trouble eating enough, leading to inadequate nutrition and failure to gain weight or grow properly.

Eating is not only critical for survival, it’s also an integral part of our social experience. A child who can’t eat or won’t eat can have a serious impact on the entire family’s quality of life.

How are swallowing disorders diagnosed/evaluated?

A thorough medical history is essential: It’s important for our medical team to understand how feeding has gone since birth to know where the problem started. The Feeding team’s doctor or speech pathologist will examine your child and get a thorough medical history. You will be asked about how your child eats and any problems you notice during feeding. The next step is a feeding observation to see how your child eats. Our feeding experts will observe your child eating to identify any signs of choking, coughing, gagging or other signs of unsafe swallowing.

Your child’s Feeding team may also recommend imaging tests to evaluate the mouth, throat and esophagus. These tests can include a barium swallow study, videoflouroscopic swallow study, endoscopy and/or esophageal manometry.

What is the treatment for swallowing disorders?

Once our experts identify the root cause of your child’s swallowing problem, they will create a customized treatment plan to address the problem. Speech and occupational therapists can suggest exercises and techniques that can improve swallowing. Our dietitians might recommend easier-to-swallow foods, such as soft foods and thickened liquids. If the problem involves narrowing of the esophagus, an endoscopic procedure called esophageal dilation can help. If your child has begun to associate eating with pain and fear, then your child’s feeding team might recommend cognitive behavior therapy with one of our pediatric psychologists.

Keep the following tips in mind when caring for a child with a swallowing disorder:

• Adding a small amount of rice cereal to formula or pumped breast milk may help. Blending the formula/cereal mixture before adding it to a baby bottle can remove the lumps and make the mixture easier to suck through a bottle nipple, as well as easier to swallow.
• Do not cut holes in bottle nipples, since this can increase the risk for choking and aspiration, as well as interfere with the baby’s oral development. Future feeding and speech skills may be affected.
• Do not start spoon-feeding until babies are at least 4 months old; they do not have the proper coordination to swallow foods from a spoon until this age.
• Your child’s speech or occupational therapist can recommend other products that help thicken liquids and make them easier to swallow.

Babies who have an oral-sensory problem such as oral aversion, which can occur after oral surgery or prolonged ventilator use, may benefit from exercises and activities to desensitize them to having objects in their mouths.

When there’s another condition causing your child’s swallowing difficulties — such as gastroesophageal reflux disease or esophageal achalasia — treating the underlying cause can also improve swallowing. Esophageal dilation can help improve swallowing in children who have scarring or narrowing of the esophagus.

What happens after treatment?

Treatment duration depends on the complexity of your child’s condition. Once your child is able to swallow and eat safely and effectively, he or she will no longer need a swallowing specialist’s care unless the symptoms return.

When should you contact a physician?

If your child is showing any unusual symptoms during eating, talk to your pediatrician. It’s important to have your child evaluated by a feeding specialist to make sure he or she can swallow safely.

What is the long-term outlook for swallowing disorders?

Some children with this condition will have long-term problems. Children who have other health problems, especially those that affect the nerves and muscles (such as muscular dystrophy and brain injury), may not be able to experience much improvement with their swallowing difficulties. Other children may learn to eat and drink successfully.

How do I live with swallowing disorders?

Feeding disorders can take a toll emotionally on children and their parents, so don’t hesitate to ask for help if you need it. Our team will coach you on what you can do at home to optimize your child’s eating and swallowing success.