By Lee Vander Loop
CP Family Network Editor
When my first daughter was born, she exhibited a total absence of any type of oral motor skill and necessitated a feeding tube from birth. Her birth injuries occurred as a result of “cord complications of unknown origin.”
When our second child was born with cord complications, my husband had orders from me (even before the delivery) not to leave our new baby’s side until he could assure me that she was neurologically fine. My husband kept his word and remained inseparable from our daughter, even when the staff discouraged his presence as she was transferred to the pediatric ward and isolette. After he was able to do his own visual assessment, he reported back to me that as soon as she stuck her fist in her mouth and he heard that sucking sound, he felt confident that she was fine. That same child was recently awarded a Bachelor’s Degree in Biology. Not all incidents of birth trauma result in cerebral palsy, just as not all incidences of cerebral palsy result in feeding disorders.
There’s nothing worse than an infant or child with eating problems. It is constant, daily stress for both child and caregiver. Moreover, eating issues are serious and need immediate intervention and treatment. Fortunately, a lot is known about eating problems and treatments are available.
Causes and Symptoms
When cerebral palsy does result from birth injury, in the same way it may affect cognitive or gross and fine motor abilities, it can also impact oral motor function. Muscles in the jaw, mouth, tongue, lips and cheeks are designed to work in harmony in the movement, breaking down and ingesting of foods and fluids. The same impulses that trigger “hypertonia” or “hypotonia” in the extremities can also impact oral muscles in the same way.
Damage to cerebral pathways or portions of the brain responsible for the impulses that facilitate oral skills can result in a variety of feeding disorders and oral motor dysfunction. Dysphagia is the term used to describe problems with swallowing.
- Following are signs and symptoms of feeding and swallowing problems in very young children:
- Arching or stiffening of the body during feeding
- Irritability or lack of alertness during feeding
- Refusing food or liquid
- Failure to accept different textures of food (e.g., only pureed foods or crunchy cereals)
- Long feeding times (e.g., more than 30 minutes)
- Difficulty chewing
- Difficulty breast feeding
- Coughing or gagging during meals
- Excessive drooling or food/liquid coming out of the mouth or nose
- Difficulty coordinating breathing with eating and drinking
- Increased stuffiness during meals
- Gurgly, hoarse, or breathy voice quality
- Frequent spitting up or vomiting
- Recurring pneumonia or respiratory infections
- Less than normal weight gain or growth
Sucking at Birth
Many children with cerebral palsy experience some degree of oral motor dysfunction. This may first become apparent in a diminished ability or total lack of ability to suck at birth. A study conducted by Children’s Hospital of Philadelphia assessing sucking behavior of preterm neonates as a predictor of developmental outcomes affirmed that sucking performance at 40 weeks Post Menstrual Age (PMA ) was significant in terms of predicting development mental status one year later.
Since PMA is not a well-known term, I’ll explain. Postmenstrual age is the time elapsed between the first day of the last menstrual period and birth (gestational age) plus the time elapsed after birth (chronological age). Postmenstrual age is usually described in number of weeks and is most frequently applied during the perinatal period beginning after the day of birth. Therefore, a preterm infant born at a gestational age of 33 weeks who is currently 10 weeks old (chronological age) would have a postmenstrual age of 43 week.
In other words, if your baby isn’t sucking normally by several weeks after birth, it’s important to talk to your doctor.
A baby who can’t take in enough nutrients to stay well-nourished may need to be fed by way of a tube. The benefits of tube feeding, also called enteral feeding, include better growth and nutrition, improved hydration, improved bowel function and consistent medication. It can also greatly free the family from anxiety and improve quality of life for both care givers and the child.
There are also disadvantages. If the child has gastroesophageal reflux, aggressive enteral feeding may increase his or her risk of aspiration or vomiting. Other physical disadvantages are diarrhea, skin breakdown or anatomic disruption. Mechanical disadvantages include a dislodged or plugged up feeding tube. Metabolic risks include blood sugar and bone density issues.
Tube feeding can be short-term or long-term, depending on many factors. Most children receiving enteral feedings can continue to receive oral feedings to fulfill the pleasurable and social aspects of eating. All infants and young children require oral-motor stimulation for developmental reasons.
Doctors will make a decision about whether a child needs to be tube fed based on the following factors:
- Inability to consume at least 80% of energy needs by mouth
- Total oral feeding time more than four hours per day
- Weight loss or no weight gain for a period of three months (less for younger children and infants)
- Weight for height (or length) less than 5th percentile for age and sex
- Triceps skinfold less than 5th percentile for age
- Serum albumin less than or equal to 3.0 g/dl
That said, my research on the topic uncovered a 2011 study of a systematic review of medical literature about tube feeding versus oral feeding in children with cerebral palsy. The study noted some risks and benefits of both, but concluded that there’s not much documented information in medical circles about whether one is better than the other and more clinical trials are needed. So, as in all cases involving medical decisions around cerebral palsy, parents need to do their homework and keep asking questions.
Here are some of them:
1. Are there reasons why tube feeding shouldn’t be done? (For example, the family lives too far from local hospitals in case of complications. The caregiver isn’t in a position to learn or carry out necessary procedures.)
2. Are there medical conditions that need to be addressed first? (Such as gastroesophageal reflux, risk of aspiration)
3. Where will the tube be inserted? (stomach, duodenum, or jejunum)
4. What is the plan for oral-motor stimulation after the tube is inserted?
Eating and swallowing problems may improve as the child grows, with time, and with treatment. Feeding with a tube and be discontinued with no ill effects. However, a decision to stop tube feedings requires the same careful planning that went into the decision to start it.
Some children may experience some degree of difficulty but not serious enough to warrant a feeding tube. A child may exhibit sensitivity to different textures and consistencies, or the temperature of a food substance, i.e., cold vs. hot, but not experience swallowing or speech difficulties. A child may be able to swallow but have difficulty with speech, chewing or moving food around in their mouth. There may be drooling and exhibit an inability to manage oral secretions requiring suctioning or medication. With children diagnosed with spastic cerebral palsy, the tightness of the muscles (hypertonia) may cause the tongue to constantly push to the palate, making oral motor skills, swallowing and speech all but impossible.
Children with any of these problems benefit greatly from speech therapy and occupational therapy services, and the attention of a speech language pathologist.
Depending on evaluation and testing, there are a number of treatments available for children with eating and swallowing problems. These range from total tube feeding to speech and nutritional therapy. The treatment plan should be decided jointly by the primary care physician, the caregiver, a speech-language pathologist and a nutritionist. Following are some of the treatment options:
- Medical intervention (e.g., medicine for reflux)
- Direct feeding by tube
- Nutritional changes (e.g., different foods, more high calorie food)
- Changes in posture or position to enhance feeding
Therapists can also work with your child on the following:
- Strengthening mouth muscles
- Strengthening tongue movement
- Improving chewing
- Accepting different foods and liquids
- Improving sucking and/or drinking ability
- Coordinating the suck-swallow-breath pattern (for infants)
- Altering food textures and liquid thickness to ensure safe swallowing