March 2, 2026

This month, we'll be discussing Children and Youth with Special Healthcare Needs (CYSHCN). Although 13 – 18% of children are considered to have special needs, there is a consistent discrepancy in terms of medical complexity, functional limitations, and resource needs among CYSHCN. These patients are commonly identified as children who require health services above the average and are expected to be required for more than 12 months, sometimes dependent on assistive devices for daily living. The group of CYSHCN patients is extremely wide and includes several conditions, such as syndromic patients, patients affected by metabolic diseases, patients with neurological problems (i.e., severe seizure or malformations of the central nervous system), patients with congenital skeletal conditions, and users of medical devices. The Centers for Disease Control (CDC) estimates that 11.2 million children (representing roughly 15.1 % of children in the United States) are CYSHCN. Greater than 11% utilize durable medical equipment, and approximately 25 – 30% of children treated in the ED have special needs. Nearly 1 out of every 5 children in the United States has a physical, intellectual, and developmental disability, as well as long-standing medical conditions. This is four times the number of hospitalizations, twice as many physician visits, and 1.5 times as many ED visits. As EMS providers, it is important to know which children in your geographic area have special needs.

Parents of these children are forced to provide managed care. Most are knowledgeable about their child’s medical history and conditions; you should use them as a resource. They live with these patients, work with the portable equipment, know how to troubleshoot, and know the treatments very well. Fortunately, we have seen many medical advancements with portable technology as well as improved and efficacious medications. When evaluating these patients, please remember to assess and manage Airway, Breathing, and Circulation (ABCs) first, as you would with any other child. Treat the child, not the equipment. If the emergency is due to the child’s equipment, use your own equipment. It is important to note that (1) physical handicaps do not necessarily imply mental deficits and (2) assess and communicate with the child on his/her developmental age, not chronological age.

• Challenges to caring for these children include: 

• Language barriers  

• Developmental delay  

• Visual/auditory deficits 

• The scene and the child’s response to that environment can be a great source of tension and anxiety 

• Multiple providers can create fear  

• Multiple voices can cause confusion 

• Anxiety in a child 

• The child may resist being restrained 

Use a soothing voice to provide comfort. Please try to explain each movement to them. Remember to ask the caregiver for a medical summary card. Sometimes, caregivers may be too stressed to remember vital information. During transport, allow the child to lie in a comfortable position and use padding around buckles and contractures. Do not use excessive force to straighten or manipulate contracted extremities. The patient may have osteopenia or osteogenic imperfecta and be prone to fractures. Brittle bones and muscle contractures can easily lead to injuries during transport; do not pull on extremities. In addition, some CYSHCN are unable to straighten extremities beyond a nominal degree. A slow, careful transfer with two or more people is preferable. Ask for the “go bag,” which usually has the child’s spare equipment and supplies. Bring the bag with you during transport. Transfer the patient, if possible, to their medical “home” hospital.  

 Next week, we will discuss specific medical illnesses/ailments that affect CYSHSN. Have a great week.

Stay warm, and thank you so much for all that you do,

Regina Yaskey, MD

March 9, 2026

Hello everyone. This week, we will continue discussing Children and Youth with Special Health Care Needs (CYSHCN).  

Pulmonary Disorders and Airway Defects 

• Apnea is defined when respirations cease for > 20 seconds or when respirations cease for < 20 seconds with cyanosis or bradycardia. It can be obstructive, central, or mixed. It affects both premature and full-term infants. If there is ever a chief complaint of apnea, then these patients should be transported to the hospital for evaluation.

• Cystic Fibrosis is an autosomal recessive disorder. It affects 30,000 Americans. It causes mucus builds up in lungs thereby causing breathing difficulty and lung infections in patients. Signs and symptoms include increased respiratory rate, increased oxygen requirement, paleness or cyanosis. Managing these patients involves giving oxygen, chest therapy with bronchial or postural draining, antibiotics, and bronchodilators (e.g. albuterol). 

Cardiovascular Heart Defects 

Congenital Heart Defects (CHDs) occur approximately in 1 in 1,000 live births. There are 2 types: Acyanotic and Cyanotic.

• Acyanotic Heart Defects account for the majority of CHD in children. It is caused by mixing of desaturated blood in the systemic arterial circulation. Oxygen saturation for these patients is in the normal range. Causes include septal defects, obstructions to the flow of blood, and incomplete heart development.

• Signs and Symptoms of Acyanotic Heart Disease

• Increased respiratory rate (tachypnea)

• Increased heart rate (tachycardia)

• Heart murmur

• Signs of heart failure include auscultation rales on lung exam, palpating a liver edge on exam, and edema noted on extremities.  

• Types of Acyanotic Heart Defects  

• Ventral Septal Defect (most common)

• Defect in wall that separates ventricles  

• Atrial Septal Defect

• Patent ductus arteriosus

• Fetal blood passage doesn’t close after birth 

• Obstructive lesions

• Narrows the aorta or valves 

• Cyanotic Heart Defects result in blood from arteries and veins that mix in the heart. It is important to note that typical oxygen saturation for these patients usually ranges from 70% - 90% on room air. Palliative procedures are often performed at birth in order to save the lives of these children. Caregivers/medical control may advise that you avoid administration of oxygen unless O2 saturation is below usual. Otherwise, never withhold oxygen (low flow). 

• Signs and Symptoms of Cyanotic Heart Disease

• Cyanosis

• Increased respiratory rate

• Retractions

• Increased heart rate

• Poor perfusion

• Diminished peripheral pulses

• Poor feeding and sweats with feeds

• Remember that low oxygen level in the blood can cause the lips, toes and fingers to look blue (cyanotic).  

• Types of Cyanotic Heart Defects 

• Hypoplastic Left Heart Syndrome 

• Transposition of the great arteries 

• Tetralogy of Fallot  

• Tricuspid Atresia  

• Pulmonary Atresia  

• Truncus Arteriosus  

• Cardiac Arrhythmias 

Down Syndrome (Trisomy 21) is the most common chromosomal abnormality. It affects 1 in 800 births. The highest risk is seen in women who are older than 35 years of age. Although super cute, these children are at risk for medical complications of multiple systems, including a large tongue, hypotonia, short neck, obesity, short stature, and loose ligaments. This can lead to difficulty when trying to provide an advanced airway in these patients.  

Conditions Associated with Down Syndrome: 

• Congenital heart disease  

• VSD, ASD, AV canal  

• Orthopedic conditions  

• Atlantoaxial subluxation  

• Neurologic Conditions  

• Epilepsy  

• Airway and Respiratory problems (large tongue, hypotonia, short neck) 

• Dental and speech abnormalities 

Traumatically Disabled Children 

Unintentional injuries are the leading cause of morbidity and mortality in these children. Examples include traumatic brain injuries and spinal cord injuries. They are at increased risk for seizures and are at high risk of abuse. EMS Providers are mandatory reporters for suspected cases of child abuse. These children may also have difficulty regulating body temperature and may need CSF shunts, feeding tubes, or wheelchairs. Pressure sores are serious concerns in these patients. If there are any concerns from the family, it is important that the child be transported to the ED for an evaluation and management. 

Thank you for all that you do. Stay safe and warm,

Regina Yaskey, MD