How is CHARGE Syndrome Treated?
CS is complex and affects many body systems – treatment often includes medical care, therapies and education support. The plan also changes as a person with CS gets older. It is helpful to involve multiple experts who can coordinate care. Treatment will address each child’s needs and focus on:
- The severity of problems
- The age of the child
- The nature of the medical problems
Early Treatment
Early on, infants and toddlers with CS often need medical care and therapies. This is due to major health issues (such as: airway, breathing, heart defects, other birth defects, feeding issues). As an infant’s medical conditions stabilize, a focus on hearing, vision, and development is vital. This will help the child to communicate and learn. Without the ability to effectively communicate, children with CS often have challenging behaviors. This is often due to frustration or used as another way to communicate. Some of these problems likely stem from chronic health issues and challenges with vision and hearing.
Ongoing Care
As the care of children with CS improves, the goal is to provide the right treatment as early as possible. It can be overwhelming to think about all of an individual’s needs at once. It can help to think of all the ways that day-to-day events can be used to build the child’s skills. Reading and interacting with children with CS promotes development and learning with each interaction.
Development of effective communication skills is a common challenge for children with CS. This can affect their day-to-day life. Most babies with CHARGE syndrome have hearing and vision challenges that can delay their development. Balance and orientation in space is also often a challenge. Further, understanding a person with CS’s needs throughout the lifespan is vital. Having a care plan in place that changes as a person with CS grows can ensure quality of life and optimal outcome. For example, all individuals with CS should be monitored for feeding problems like aspiration or things going into the lungs or windpipe when a person eats or swallows their spit. This is important to know as soon as possible. Our team or your care team should monitor for this as a person grows.
As we have seen, care and the journey of an individual with CS is a complex and unique experience. Individuals often need long-term medical and educational support. Timely support helps them meet their potential. Early and effective care and support helps children with CS participate meaningfully at home, school, and in their community. Families know their loved one best, and their priorities and goals should stay at the forefront of care. Other important care should be provided, and our team is here to help you make a proactive plan moving forward.