Trisomy 18: How Are Swallowing and Aspiration Evaluated?

Feeding difficulties are very common in children with Trisomy 18, and understanding how to evaluate and manage them is a crucial part of care. Because of physical features like low muscle tone (hypotonia), a smaller jaw or airway, and neurological differences, swallowing can be uncoordinated or weak ^[1]. This puts children at a high risk for aspiration—when food, liquid, or saliva enters the airway and lungs instead of the stomach ^[2].

Aspiration can cause severe respiratory illnesses, poor growth, and distress ^[3]. Because of this risk, your child’s medical team will carefully evaluate their swallowing using clinical assessments and specialized testing, while keeping your family’s goals of care at the center of all decisions.

⚠️ Important Safety and Warning Signs

Stop feeding and seek emergency medical help if your child turns blue or gray, has prolonged breathing pauses (apnea), becomes unresponsive, or experiences severe choking that does not resolve.
Contact your care team promptly if you notice recurrent coughing during feeds, increased effort to breathe, fever, poor intake, or signs of dehydration (such as fewer wet diapers).

The Clinical Feeding Assessment

A clinical feeding evaluation is usually the first step, performed by a speech-language pathologist (SLP) or an occupational therapist (OT). They will review your child’s medical and developmental history, observe their muscle tone, and watch them during a typical feed to assess their skills and look for visible signs of difficulty, such as a wet or gurgly voice, choking, or breathing pauses ^{[4] [5]}.

While this bedside evaluation is incredibly valuable, it has a major limitation: it cannot rule out silent aspiration ^{[6] [7]}. Silent aspiration occurs when liquid or food enters the lungs without triggering a cough or any visible signs of distress. Because silent aspiration is common in medically fragile children, a normal bedside assessment does not guarantee that swallowing is completely safe ^[5].

Instrumental Swallowing Evaluations

When the clinical team needs to see exactly where the milk or food is going, they will recommend an instrumental evaluation. The two main tests offer complementary information, and the choice depends on your child’s clinical needs, respiratory status, and what the team needs to learn ^[8].

• Videofluoroscopic Swallow Study (VFSS): Also known as a Modified Barium Swallow Study (MBSS), this is a moving X-ray taken while your child drinks or eats food mixed with barium ^[9]. Pros: It provides real-time visualization of the oral phase (mouth) and pharyngeal phase (throat), confirming if and when aspiration happens ^{[9] [6]}. Limitations: It involves radiation exposure, is only a brief snapshot of a feed, and requires traveling to the radiology suite ^[10].
• Fiberoptic Endoscopic Evaluation of Swallowing (FEES): This is an endoscopic examination where a tiny, flexible camera is passed through your child’s nose to view their throat while they drink their normal formula or breastmilk ^[11]. Pros: It uses no radiation, can be done at the bedside in your child’s typical feeding position (including during breastfeeding), and allows the team to assess fatigue over a longer period and see how the child manages their own saliva ^{[5] [11]}. Limitations: It does not assess the oral or esophageal phases, and the camera view briefly “whites out” at the exact moment of the swallow ^{[9] [11]}.

Strategies to Protect the Airway

If a swallowing issue is identified, the feeding team will work with you to develop a safe, individualized feeding plan. Never change your child’s feeding position, liquid thickness, or nipple flow without specific guidance from your clinician.

Positioning and Cue-Based Pacing

How your child is positioned and the speed of the milk flow can impact their airway safety. Some infant studies show that side-lying positioning (feeding on the side rather than semi-upright) can reduce aspiration by giving the baby better control over the liquid ^[12]. However, this is not safe for every child with Trisomy 18. Therapists also focus on cue-based feeding—using a specific nipple flow and offering pauses when your child shows stress or fatigue, rather than forcing them to finish a set volume ^[13]. Keep in mind that while slower nipples can reduce the flow, they can also increase the effort required, making your child more fatigued ^[14].

Thickened Liquids

If thin liquids move too quickly, the team might prescribe thickening your child’s milk or formula so it moves slower, giving the muscles more time to coordinate the swallow ^[15]. However, thickeners carry significant risks:

• Some gum-based thickeners are unsafe for premature infants or infants under a certain age due to severe intestinal complications ^[16].
• Thickening changes the calories, osmolality, and hydration of the feed ^[17].
• Thicker liquids can leave behind residue (liquid pooling in the throat) that may be aspirated after the swallow ^[18].
  Thickeners must be mixed to an exact target consistency prescribed by your feeding team and closely monitored for side effects like constipation, dehydration, or reduced intake ^[18].

Managing Reflux

In a combined otolaryngology study of children with Trisomy 13 and 18, 47% had gastroesophageal reflux disease (GERD) ^[2]. Reflux is different from swallowing dysfunction, but severe reflux can cause stomach contents to come back up and be aspirated ^{[19] [20]}.
While doctors may prescribe acid-reducing medications, these medicines do not stop reflux or prevent aspiration; they only make the fluid less acidic. To help manage reflux, clinicians may suggest holding your child upright after feeds ^[20]. Safe Sleep Warning: An infant should only be kept upright while awake and supervised. For sleep, they must always be placed flat on their back on a firm sleep surface.

When to Consider Tube Feeding

If oral feeding remains unsafe, causes recurrent respiratory infections, or requires so much effort that your child cannot gain weight, the team may suggest enteral feeding (tube feeding) ^{[21] [22]}. In some reported parent-survey cohorts of children with Trisomy 18, up to 85–90% received enteral feeding at some point ^[23].

• Nasogastric (NG) Tubes: A small tube passed through the nose into the stomach. It is often used as a bridge, but can sometimes be used longer-term depending on the child ^[21].
• Gastrostomy (G-tube): A tube placed directly into the stomach through the abdomen. The decision to place a G-tube depends on your child’s anatomy, cardiac and respiratory status, anesthesia risks, expected duration of need, and your family’s goals ^{[21] [24]}. While many families find G-tubes helpful for long-term care, they carry burdens, including surgical risks, site infections, leakage, granulation tissue, and the risk of dislodgement ^[25].

A feeding tube removes the risk of aspirating food from a bottle, but it does not prevent a child from aspirating their own saliva or refluxed stomach contents. Additionally, having a tube does not automatically mean all oral experiences must stop. If approved by the clinical team based on safety testing, some children may be cleared for small, clinician-approved “pleasure tastes” or non-nutritive oral care/stimulation to support comfort and development ^[26].

Building Your Feeding Team

Managing feeding in Trisomy 18 requires a coordinated, individualized approach based on your child’s unique anatomy, health, and family goals ^[4]. Your team may include:

• Speech-Language Pathologists (SLP) & Occupational Therapists (OT): To evaluate swallowing, guide feeding techniques, and suggest safe oral care.
• Registered Dietitian (RD): To ensure adequate calories and hydration.
• Gastroenterologist (GI): To help manage reflux, digestion, and tube care.
• Pulmonologist and ENT (Ear, Nose, Throat) Specialists: To monitor lung health and assess airway anatomy.
• Palliative Care Specialists: To support your family with complex decision-making, ensuring that interventions align with your goals for your child’s comfort and quality of life at any stage of their journey ^{[27] [28]}.