Medical Conditions

ACHONDROPLASIA

Achondroplasia is a genetic disorder of bone growth. It is the most common form of dwarfism with disproportionate short stature, including a long torso with short extremities. A three year old child at the 50th percentile for height on the achondroplasia specific growth chart, is the height of a typically developing one-year-old at the 50th percentile. Children with achondroplasia have a head size that is usually near or above the 95th percentile. This measurement is followed closely in infants as hydrocephalus can develop during the first two years of life.

Considerations for Restraint Selection

Car seat selection should be determined by the size and positioning needs rather than age of the child.
Use a rear-facing car seat for infants and young children as long as possible. A rear-facing seat will provide the best protection and positioning angle for a child with hypotonia, ligamentous laxity or loose ligaments, macrocephaly and skeletal dysplasia. This positioning will also help prevent thoraco/lumbar and lumbar/lordosis. Families may benefit from suggestions for behavioral intervention to promote continuing the rear-facing position as long as possible.
Then, use forward-facing car seats for older children
Transition to belt-positioning booster when the upper-most weight limit of harness is reached
Remain in booster until seat belt fits
Adolescent or adult drivers usually require a vehicle that is adapted with equipment such as hand controls or pedal extenders to position the driver an appropriate distance from the air bag (10-12 inches). Families should work with a driver rehabilitation specialist (866-672-9466, www.driver-ed.org) who is qualified to assess the driver’s transportation needs and who can provide them with a list of appropriate vehicle modifications. In rare instances, it may be necessary to get approval from NHTSA for disabling an air bag.

APNEA

Apnea is the temporary interruption of breathing whether normal or abnormal. Pathological apnea is a respiratory pause of more than 20 seconds or a shorter pause associated with cyanosis, marked pallor, hypotonia, or bradycardia. There are different reasons why children experience apnea. One type of apnea, called positional apnea, is directly related to a child’s sitting position. Children who suffer from positional apnea may have increased symptoms or even stop breathing if their heads flop too far forward and the airway becomes obstructed.

Considerations for Restraint Selection

Conduct a period of observation of infants in their car seat prior to discharge.
If an infant with positional apnea requires a car bed, the infant should be monitored in the car bed prior to discharge. Infants discharged in car beds will need to be re-evaluated in a rear-facing child restraint before transitioning out of the car bed.
Select a car seat that can be positioned at an angle, according to manufacturer’s instructions, that does not compromise the child’s respiratory status.
Select a car seat with a forward facing recline when child exceeds rear-facing limit.
Travel with and secure prescribed medical equipment.

AUTISM SPECTRUM DISORDER

Autism spectrum disorder symptoms may include delay in language acquisitions, impairment in social interaction, a narrow span of interests and occurrence of repetitive behaviors. The children often have a need for sameness and may require compulsive rituals. Repetitive mannerisms like hand or finger flapping and body rocking may be present. The children may also be very sensitive to certain textures and sounds.

Considerations for Restraint Selection

With limited communication skills and a tendency to not respond to direct interaction, use of seats that provide five-point restraint as long as possible or use of a vest for older children is often necessary.
If a child tends to “escape” their car seat, make sure the car seat type is appropriate and being used correctly before deciding to use another seat.
Families may have to try a variety of seats to see from which it is the most difficult to escape.
A large medical seat with seat-specific accessories that deter escaping behaviors may be necessary.
An upright vest with back closure and/or floor mount tether may be more difficult to escape.
Advise families not to modify restraints in attempts to deter escaping behaviors.
If the child is in a car seat and unbuckling the seat belt, try installing the car seat with LATCH. (if the child is within the weight parameters and the vehicle is equipped with anchors).
If a child is bothered by light touch, make sure the harness or vest is snug, flat and not twisted. Also, make sure the harness is touching clothing, not the child’s skin. Tight fitting underclothes may help prevent irritating light touch.
Behavioral management counseling may be beneficial.
Caregivers also need to be aware that children may have difficulty with transitions including adapting to a new car seat, a substitute bus driver or a different route to school.
If possible, have an adult sit in the back seat to supervise the child’s behavior.
Refer to the Car Safety for Your Child with Autism brochure for additional information.

BEHAVIORAL CHALLENGES

Children who exhibit behaviors such as impulsiveness, distractibility, and short attention span which may be associated with conditions such as autism, attention deficit-hyperactivity disorder, or cognitive impairment may resist consistent use of car seats and prove to be serious distractions to drivers. Many parents need guidance with management of behavioral problems and may benefit from assistance from their family physician, pediatrician, or a counselor. Children with severe behavioral challenges frequently do not readily respond to consistent limit setting and require specialized restraints in vehicles.

Considerations for Restraint Selection

Check to see if the child’s car seat is appropriate and being used correctly before deciding to use another seat.
Families may have to try a variety of seats to see from which it is the most difficult to escape.
Advise families not to modify restraints in attempts to deter escaping behaviors.
A car seat with a higher weight harness or large medical seat may provide securement for older children. Some large medical seats can be ordered with seat-specific accessories that deter escaping behaviors.
An upright vest with back closure and/or floor mount tether may be more difficult to escape.
If possible, have an adult sit in the back seat to supervise the child’s behavior.
Behavioral management counseling may be beneficial and should also be considered.
If the child is in a car seat and unbuckling the seat belt, try installing the car seat with LATCH. (if the child is within the weight parameters and the vehicle is equipped with anchors).
During school bus transportation, an upright travel vest or other school bus restraint system may be advised.

CASTS

Casts are used to immobilize a part of the body. Casts are made from plaster or fiberglass and can be applied as primary treatment as in a developmentally dislocated hip, post-operatively as in a tendon release, or after a trauma such as a fracture. In order to immobilize the affected area, the cast will extend below and above this area.

Considerations for Restraint Selection

Determine whether or not the type of cast applied affects the child’s ability to sit up.
- If a child has a cast and can sit up, a standard restraint will probably work.
  - However, the following should be considered:
    - The wide spread of a broomstick cast may hit the sides of a standard convertible car seat. A car seat with low sides may be appropriate.
    - Leg support, in the form of pillows, should be provided.
- If a child has a cast and cannot sit up:
  - Alternative restraints appropriate for a child’s size (such a car bed, Wallenberg convertible seat, forward-facing Spirit Spica, or Lay Down/Modified EZ-ON vest) should be considered.
  - In some instances, a car seat with low sides may accommodate a child.
  - Under no circumstances should a child with a cast be transported on a reclined vehicle seat. The seat belts will not contact the child’s body properly, and the child could submarine under the belt system.
  - Professional transportation may be required.
Refer to the Car Safety for Children in Hip or Leg Casts brochure for more information.

CEREBRAL PALSY

Cerebral Palsy (CP) is a group of disorders of movement and posture due to a non-progressive defect or lesion of the brain. Damage can occur before or after birth (e.g. complication of prematurity, German measles, Rh incompatibility, head injury, illness such as meningitis, lead poisoning and trauma due to child abuse). Developmental delays in an infant or toddler are usually the first indicators of cerebral palsy. Symptoms range from slight speech impairment to total inability to control body movements.

Considerations for Restraint Selection

Since children with CP may experience poor head and trunk control, they will benefit from riding rear-facing to higher weights
Once a child travels forward-facing, a seat that can be semi-reclined forward facing may help keep the head from falling forward during normal driving.
Rolled blankets can assist with centering the head and torso.
A soft cervical collar can be used to help prevent the head from falling forward.
Children with poor head and trunk control may require the support of an adaptive restraint after they have outgrown a standard car seat: work with an OT or PT to determine and order the most appropriate restriant.
A wheelchair may be necessary for transport.
Refer to the Car Safety for Children with Cerebral Palsy brochure for more information.

DEVELOPMENTAL DELAYS

As a child grows and matures, he or she acquires developmental skills such as sitting up, walking, and talking. Children who have developmental delays have slower than normal rates of acquisition of developmental milestones or skills, including behavioral and motor skills. Developmental delays are associated with a number of medical conditions. These include, but are not limited to, prematurity, low birth weight, and congenital anomalies. Some children experiencing developmental delays will eventually catch up with their peers. Other children will be limited in their abilities to acquire appropriate developmental skills and will need the support of medical and rehabilitation services to function to the best of their ability

Considerations for restraint selection

The restraint will depend on the specific problem associated with the developmental delay. For example, a child who has not developed head and neck support typical for her age will benefit from riding rear-facing longer.
Older children who have outgrown car seats with harnesses to 65 pounds may be developmentally immature and require a higher weight harness or upright vest.
Children who demonstrate cognitive deficits/intellectual disabilities/delays may need behavior plans to ensure staying buckled up. (See Behavioral Challenges)
Vests with back closures and floor mount tethers or large medical seats with seat specific accessories designed to deter escaping behaviors may be indicated for some children.

DOWN SYNDROME

Down syndrome, caused by the effects of having an extra portion of the number 21 chromosome, is the most frequently occurring chromosome abnormality. It occurs in approximately 1 in 691 births. Children who have Down syndrome tend to be smaller than their typically developing peers and usually have developmental delay. Most affected children have moderate intellectual disabilities, but their intelligence can range from mild to severely impaired.

Nearly 50 percent of children who have Down syndrome have congenital heart defects and may require cardiac surgery. Additional structural defects can include tracheoesophageal fistula, bowel obstruction and other gastrointestinal abnormalities. Some may have a tracheostomy or gastrostomy tube. Skeletal abnormalities can include hip subluxation and atlantoaxial instability (instability of first and second cervical vertebrae). Children who have Down syndrome frequently have reduced muscle tone and loose ligaments resulting in hyper-mobile joints (often referred to as “double-jointed”). Children with Down syndrome have a tendency to become overweight as they grow older.

Considerations for Restraint Selection

Conduct a period of observation of infants in their car seat prior to discharge due to hypotonia.
If an infant with Down syndrome requires a car bed, the infant should be monitored in the car bed prior to discharge. Infants discharged in car beds will need to be re-evaluated in a rear-facing child restraint before transitioning out of the car bed.
Position rear-facing as long as possible due to risk of hypotonia and atlantoaxial instability; this is especially feasible because of smaller size.
Restraints with higher weight harnesses, large medical seats, or upright travel vests at older ages may help prevent children with loose ligaments and hyper-mobile joints and/or behavioral issues from getting out of their restraint. (Refer to Behavioral Challenges.)
Children with behavioral challenges may also benefit from behavior plans.
After cardiac surgery, check with the surgeon about pressure on chest incision.
An older child who is overweight may require a large medical seat to accommodate size.
Hypotonicity of muscles coupled with hyperextensibility of joints can result in difficulty with positioning, which may be helped with the addition of lateral support rolls or a large medical seat with positioning accessories.
During school bus transportation, an upright travel vest or other school bus restraint system may be advised.
Refer to the Car Safety for Children with Down Syndrome brochure for more information.

FEEDING TUBES

A gastrostomy feeding tube is inserted directly through the abdominal wall into the stomach or a jejunostomy tube into the intestines. This procedure is necessary to provide or improve nutrition for children. Another feeding tube called a nasogastric tube may be inserted through the nose into the stomach.

Considerations for Restraint Selection

The type of feeding tube, location and protrusion above the skin will vary, which may affect harness fit.
Select a car seat that does not rub against the feeding tube.
Cover the opening with gauze if the tube comes out during travel.
Families should have an emergency plan to replace the tube.

GASTROESOPHAGEAL REFLUX (GER)

Gastroesophageal reflux (GER) is characterized by vomiting or regurgitation of gastric contents into the esophagus as a result of relaxation or incompetence of the lower esophageal sphincter. Although GER is considered normal in newborns, continuation of severe reflux can produce symptoms such as weight loss and respiratory problems. GER is more common in premature infants, children with neurological impairment, and after esophageal surgery.

The angle of the back of the car seat to the bottom of the car seat may increase intra-abdominal pressure, aggravate the reflux or make the reflux worse. Physicians may prescribe a specific position that will affect the choice of a car restraint (e.g. car bed).

Considerations for Restraint Selection

Wait an hour after feeding before traveling.
Explain the car seat angle and discuss positioning options with the physician.
Use the car seat only for travel.

HALO TRACTION

Halo traction is a metal frame attached to the skull for the purpose of treating neck fractures, degenerative diseases of the cervical spine, and stabilizing the cervical spine post-operatively. Research on the impact halo traction has on crash dynamics and on safe restraint use is minimal and inconclusive. In order to position a harness over a child’s shoulders, the harness must usually be routed through the frame of the halo instead of outside of the frame.

Considerations for Restraint Selection

Select a seat that provides adequate room for the halo.
Select a seat with a harness that is easy to route over the shoulders and secure. Rear-facing, select a seat with a harness that can be easily removed from a splitter plate and rerouted over the shoulders once the child is in the seat. Forward facing seats with harnesses may need to be reinstalled every time the child is restrained unless the harness can be removed and rerouted from the front of the seat.
Make sure that the child can be evacuated in an emergency.
Consider a seat that can be tethered.
Consider a Lay Down/Modified EZ-ON vest for older children who must lie down.
Consider an adjustable upright vest for older children, with shoulder straps that can be unthreaded, routed through the frame and over the child’s shoulders for ease of use.

HYDROCEPHALUS

The term hydrocephalus describes an abnormal increase in the amount of cerebrospinal fluid within the cranial cavity that, if untreated, is accompanied by expansion of the cerebral ventricles, enlargement of the skull and forehead, and atrophy of the brain. Increased fluid is diverted via a shunt into the peritoneal cavity, heart or gall bladder and reabsorbed into the blood stream. Hydrocephalus can be caused by a number of different medical conditions, including congenital abnormality, prenatal and postnatal infection, tumors, trauma, and malignancy. It is commonly associated with myelomeningocele.

Considerations for Restraint Selection

Children with disproportionate head size benefit from rear facing to higher weights.
A large car bed may be indicated in some cases.
Select seat with roomier head area.
Forward facing seats that can be semi-reclined can assist with comfort for older children.
Additional considerations will be specific to related medical conditions.

LOW BIRTH WEIGHT AND PREMATURE INFANTS

Low birth weight infants are those born weighing less than 2500g. This classification includes premature and some full-term infants. One of the leading causes of infant mortality, low birth weight is related to inadequate prenatal care, teenage pregnancy, and multiple deliveries.

Premature infants are those infants less than 37 weeks gestational age at birth. Improvements in medical care have increased the survival rate for premature infants and contributed to the discharge of premature babies at lower weights. Some infants, especially low birth weight infants born full term, have been discharged at weights as low as three pounds.

According to the Clinical Report released by the American Academy of Pediatrics (AAP) in 2009, small and premature infants should be restrained in car seats that fit their smaller size. Rear-facing seats that have the shortest distance from the seat back to the crotch strap and that have the shortest distance from the harness slots to the seat bottom will provide the best fit.

In addition, the AAP recommends that infants born prematurely be observed for apnea, bradycardia, and oxygen de-saturation while positioned in a car seat. (See Glossary for definitions). This period of observation or monitoring should take place before the infant is discharged from the hospital and should be conducted by appropriate staff. Significant documented events warrant interventions such as supplemental oxygen, use of car bed, continued hospitalization, or additional medical assessment.

Infants who experience documented events may also be at risk in other upright equipment (swings, slings, carriers etc.).

Considerations for Restraint Selection

Prior to discharge, monitor according to AAP guidelines. Observe a minimum of 90-120 minutes or duration of travel (whichever is longest).
Select car seats with smaller harness dimensions, multiple harness slots, and appropriate minimum weights.
Do NOT add padding under or behind the infant to make the seat fit the baby.
Center infant with rolled receiving blankets; position crotch roll if needed to prevent submarining.
Maintain appropriate recline angle during monitoring and in vehicle.
Monitor infants in car beds prior to discharge if they are being released in a car bed.
Infants discharged in car beds will need to be re-evaluated in a rear-facing child restraint before transitioning out of the car bed.
Travel with and secure prescribed medical equipment
If possible, have an adult sit in the back seat and observe the baby.
Use a car seat only for travel.

Many hospitals have followed the AAP’s recommendations to develop policies that include car seat evaluations in their discharge planning process. Policy or protocol specifics will vary from hospital to hospital. When developing a hospital protocol for monitoring premature infants, it is important to:

Define the population to be monitored.
Identify appropriate staff and their roles.
Determine parameters for monitoring.
Determine length of monitoring.
Determine when monitoring will occur.
Develop documentation procedures and forms.
Develop follow-up guidelines.
Make provisions for alternative restraints.
Provide appropriate training and information to all parties involved.
Determine associated costs.

MYELOMENINGOCELE OR SPINA BIFIDA

Myelomeningocele or spina bifida is a birth defect of the spine resulting from abnormal closure of the neural tube during early formation of the central nervous system. At the location of the opening, nerve development is adversely affected and the formation of bone, muscle, and skin around the spinal cord is affected. A sac, called a cele, is created at the opening. The cele can be covered by a thin layer of nerve tissue and sometimes by skin. It occurs in approximately 1 in every 2,858 live births.

The location of the cele determines the extent of nerve damage. In general, the higher the location of the cele, the more nerves are involved and the greater the damage. As a result of the nerve damage, children with myelomeningocele or spina bifida, experience lack of bladder and bowel control, lack of sensation in the lower extremities, muscle weakness and imbalance, or paralysis. Initial treatment of myelomeningocele is surgical repair of the cele. Children with spina bifida are at increased risk of the associated problem of hydrocephalus and frequently require treatment with a ventriculo-peritoneal shunt.

Considerations for Restraint Selection

A car bed may be required during the postoperative period following myelomeningocele repair.
Children with hypo-ventilation may require a car bed or car seat with adequate recline.
Keep rear-facing to higher weights due to smaller size, low tone, and or/large head with hydrocephalus.
The support provided by an adaptive car seat may be indicated for older children. Work with an OT or PT to determine the best option.
A wheelchair may be necessary for mobility.
Due to varying degrees of sensation loss, children may be unaware of problems caused by improper fit in their car seat. Monitor them closely for redness and skin breakdown.

OMPHALOCELE

An omphalocele is a congenital abnormality in which the abdominal contents are outside the abdomen in a sac, due to a defect in the development of the muscles of the abdominal wall. It occurs in approximately 1 in every 5,386 live births. Approximately 25 – 40% of infants with an omphalocele have other birth defects, including genetic problems affecting the spine, heart, and digestive system.

Typically, small omphaloceles are surgically repaired after birth. Large omphaloceles are surgically repaired over a period of time so that child can grow and the abdominal cavity can accommodate the organs. Until repaired, care must be taken to protect the exposed organs from injury.

Considerations for Restraint Selection

Consult with the child’s surgeon and trial seats with the surgeon to determine the best options. Pressure from the chest clip and buckle prongs could be of concern and placement should be considered.
Initially, infants may require a car bed with restraint bag instead of a car seat with a harness.
Before the child outgrows the car bed, consider feasible options with the surgeon.
If the child can ride in a rear-facing seat, position rear-facing as long as possible.
The child’s medical team and family may need to consult with a private manufacturer concerning adapting a car seat with a harness.

OSTEOGENESIS IMPERFECTA

Osteogenesis imperfecta, also known as brittle bone disease, is a genetic disorder of the skeletal system, characterized by extreme brittleness of the long bones. There are several types of osteogenesis imperfecta, and symptoms and severity of symptoms can vary from type to type and from child to child. Characteristic features can include bones that fracture easily, short stature, skeletal deformities of limbs, chest, and skull, scoliosis, respiratory difficulties, and weak muscles.

Considerations for Restraint Selection

Infants who have respiratory difficulties may benefit from travel in a car bed. Airway problems may be restrictive or obstructive.
Car seats that allow rear-facing to higher weights will allow children of short stature to remain rear-facing longer, therefore protecting them more effectively from injury, especially to the spine.
Look for a car seat with padding that helps the child ride comfortably.
Children with leg fractures and casts will require restraints that will accommodate the type of cast applied.
Older children who are severely affected may need to use a wheelchair.
Work with an occupational or physical therapist.
Refer to the Car Safety for Children with Osteogenesis fact sheet for more information.

OVERWEIGHT AND OBESITY

Overweight and obesity are both labels for ranges of weight that are greater than what is generally considered healthy for a given height. For children and adolescents (ages 2-19), overweight is defined as Body Mass Index (BMI) between the 85th and 95th percentiles for children of the same age and sex. Obese is defined as having a BMI above the 95th percentile.

Children who are obese frequently exceed the weight limits of a car seat before they are developmentally ready for the next step.

Considerations for Restraint Selection

Rear-facing seats to higher weights then forward facing seats to higher weights or boosters to higher weights.
Try before buying to make sure child fits hip and shoulder widths.
May need a large medical seat or adaptive booster to higher weights.
May need a travel vest (up to 168 pounds).
Refer to the Car Safety for Children Who Have Childhood Obesity or Are Overweight Fact Sheet for more information.

PIERRE ROBIN SEQUENCE

Pierre Robin Sequence is a congenital defect of the face characterized by abnormal smallness of the lower jaw and retro-positioning of the tongue with frequent obstruction of the airway. Cleft palate may also be present.

Treatment needs vary greatly depending on the severity of the baby’s problems. Some infants only require use of a monitor or oxygen, others may need to be positioned prone. Surgery to make the jaw bone grow longer (mandibular distraction osteogenesis) or a tracheostomy may be also be required to maintain a stable airway in some cases.

Considerations for Restraint Selection

Conduct a period of observation of infants in their car seat prior to discharge.
If an infant with Pierre Robin Sequence requires a car bed, the infant should be monitored in the car bed prior to discharge. Typically, they will be positioned prone in the car bed and will require close observation.
For infants positioned prone or on oxygen, follow-up sleep studies will be necessary to determine when the infant can travel semi-reclined.
Follow-up sleep studies will be necessary to determine when the infant can travel semi-reclined.
Travel with and secure prescribed medical equipment.

RETT SYNDROME

Rett syndrome is a genetic neurodevelopmental condition that primarily affects females. Children with Rett syndrome may exhibit some signs similar to Angelman’s syndrome, cerebral palsy and autism. They usually have typical development until 6-18 months, then start to regress. They may begin to exhibit signs of hypotonia, and begin to lose purposeful hand movements, balance and coordination.

The clinical features include small hands and feet and a decreased rate of head growth (including microcephaly in some). Repetitive hand movements, such as wringing and/or repeatedly putting hands into the mouth, are also noted. People with Rett syndrome are prone to gastrointestinal disorders and up to 80% have seizures. They typically have no verbal skills, and about half are not ambulatory. Scoliosis, growth failure, and constipation are very common and can be problematic.

Considerations for Restraint Selection

Rear-face as long as possible due to abnormal tone.
Use a forward-facing seat with higher weight harness as long as possible, secondary to cognitive delays, language delays, writhing, rocking, hypotonia, problems with balance, and/or repetitive movements.
Some children may require an adaptive restraint once they have outgrown a forward-facing seat.
Some children may require a wheelchair.

SCOLIOSIS

Scoliosis is a term used to define curvature of the spine and its supporting structures. Scoliosis can be congenital and associated with conditions such as myelomenigocele or cerebral palsy. Severe scoliosis can lead to pulmonary complications.

In instances where surgery is necessary to correct the curvature, a body jacket may be applied post-operatively.

Considerations for Restraint Selection

A car bed with a restraint bag may be necessary for an infant.
Children with severe scoliosis may be unable to sit properly in car seats with their backs and bottoms flat against the seat and may require towel rolls along one side of the torso to accommodate the curvature.
Consider adaptive restraints with optional positioning pads, or positioning pads that can be customized to fill in the space the curvature creates.
Consider an adaptive restraint that offers a scoliosis harness
Work with an occupational or physical therapist.
A Lay Down/Modified EZ-ON Vest may be necessary for children who must lie down or can be better positioned lying down.
A wheelchair with customized insert may necessary in some cases.

SEIZURE DISORDERS

Seizure disorders are a result of abnormal electrical activity in the brain. Seizures are associated with a number of conditions including congenital disorders, brain injury, infection, high fevers, and tumors. Symptoms can range from staring to uncontrollable muscle jerking and loss of consciousness (generalized tonic-clonic seizure). Seizures are usually controlled with medication but may still occur intermittently.

Considerations for Restraint Selection

For older children, a five-point harness to higher weights instead of a belt-positioning booster or adult seat belt will provide more support during a generalized tonic-clonic seizure and avoid secondary injuries from hitting the interior of the vehicle; or provide support if a child has decreased tone post-seizure.
During a seizure, pull vehicle to a safe location to attend to the needs of the child.

SPINAL MUSCULAR ATROPHY (SMA)

Spinal Muscular Atrophy is a motor neuron disease characterized by muscle wasting and motor impairment. The nerves do not conduct impulses to the muscles in a normal manner. Usually, the muscles closest to the trunk are affected the most. Approximately 1 out of 6000 babies are born with SMA. It is the most common genetic cause of infant death. Life expectancy is 2-3 years, although a child with Type III, a less severe form, may survive to early adulthood. There are varying degrees of severity of SMA. Children diagnosed with SMA may have severe hypotonia, respiratory problems, and feeding issues. Intellect and sensation are not affected.

Considerations for Restraint Selection

A car bed may be indicated in some cases.
If an older child must lie down, a Lay Down EZ-ON (previously the Modified EZ-ON) vest may be necessary.
Rear-facing as long as possible.
If an older child can tolerate forward-facing, consider a forward-facing seat that can semi-recline and has a higher weight harness.
Some children may require an adaptive restraint with positioning accessories.
Secure prescribed medical equipment.
If possible, have an adult sit in the back seat and observe the child.
If a child has a feeding tube, select a restraint that does not rub against the tube. (See Feeding Tubes.)
Some children may require a wheelchair.
Work with a rehabilitation therapist to address positioning needs.

Tracheostomy

A tracheostomy is the surgical operation of cutting into the trachea through the neck to allow passage of air. A “trach” tube is inserted into the opening and attached to oxygen or a ventilator. Some children who have tracheostomies are “technology dependent” and require life-support equipment at all times.

Considerations for Restraint Selection

A car seat that can be semi-reclined forward facing can help position a child’s head back and prevent the chin from covering the trach tube.
Secure medical equipment.
Any equipment that uses batteries should have enough power for at least double the length of the trip.
Have an emergency plan to replace the tracheostomy if it comes out during travel.