The “Fatal Five” in Intellectual and Developmental Disabilities: What Parents and Caregivers Need to Know

The “Fatal Five” refers to five common medical conditions that can be fatal in people with intellectual and developmental disabilities (IDD), particularly when symptoms are missed or treatment is delayed. Persons with IDD are at a higher risk than the general population as they may not be able to verbalize their symptoms or may exhibit behaviors that can mask the signs of life-threatening conditions.

1. Aspiration
   • Occurs when substances like food or liquids enter a person’s airway and lungs upon swallowing causing aspiration pneumonia.
   • Symptoms: coughing, wheezing, chest pain, shortness of breath, and fever. In more severe cases, aspiration can lead to difficulty breathing, blue skin color, and a rapid heart rate.
   • Prevention:
     • Screen for swallowing problems/dysphagia.
     • Use the person’s recommended food and liquid consistency.
     • Ensure proper upright positioning during meals and afterward.
     • Provide appropriate feeding assistance and allow adequate time to eat.
     • Monitor for coughing, choking, wet/ gurgly voice, recurrent chest infections, or changes in breathing.
2. Constipation
   • Can progress to fecal impaction, bowel obstruction, perforation, or sepsis.
   • Symptoms of bowel obstruction include severe abdominal pain, cramping, bloating, inability to pass gas, vomiting, and even loud bowel sounds.
   • Prevention:
     • Encourage adequate fluids and fiber when appropriate.
     • Promote regular physical activity.
     • Establish a consistent toileting routine.
     • Monitor bowel movements and know the person’s normal pattern.
     • Review medications that can cause constipation.
3. Dehydration
   • May occur because of inadequate fluid intake, swallowing difficulties, or inability to communicate thirst.
   • Symptoms: dizziness, weakness, dry mouth, sunken eyes, infrequent urination, or lethargy.
   • Prevention:
     • Regularly drink water throughout the day.
     • Monitor fluid intake when necessary.
     • Take extra precautions during hot weather or illness. Avoid soda to rehydrate.
4. Seizures
   • Seizures are episodes of disturbed brain activity and can affect one part or multiple parts of the brain.
   • Epilepsy is diagnosed when you have recurrent seizures. It is more common in people with IDD and can lead to injury, status epilepticus, or sudden unexpected death in epilepsy (SUDEP).
   • Prevention:
     • Each person with IDD may have unique triggers that lead to seizures. Identify and minimize their exposure to these triggers. Common ones include bright or flashing lights, certain noises, sensory overload, and extreme emotional stress.
     • Take anti-seizure medications exactly as prescribed.
     • Maintain regular medical/neurology follow-up.
     • Know the person’s typical seizure pattern and individualized seizure action plan.
     • Train caregivers to recognize and respond to seizures.
     • Seek emergency help for prolonged or repeated seizures according to the person’s plan.
5. Sepsis
   • A life-threatening response to infection. Signs may be subtle or atypical in people with IDD. Sepsis is a serious medical condition in which the body’s response to infection causes widespread inflammation, leading to organ dysfunction and potential failure.
   • Symptoms: high fever or low body temperature, rapid heart rate, rapid breathing, confusion, extreme pain, and an overall feeling of unwellness. If left untreated, sepsis can quickly progress to life-threatening septic shock.
   • Prevention:
     • Prevent infections through vaccination, hygiene, dental care, skin care, and appropriate treatment of wounds.
     • Recognize infections early.
     • Watch for changes from the person’s baseline, including unusual sleepiness, behavior changes, reduced eating/drinking, breathing changes, fever or unusually low temperature.
     • Seek medical assessment promptly when serious infection is suspected.