Approximately 60% of CHARGE children learn symbolic language and communicate through spoken language, signs, and/or visual symbols. Craniofacial deformities, respiratory issues, and clefts can all have an impact on speech mechanics. However, most children are able to speak with the right support.
CHARGE is a disorder that affects many parts of the body, including the brain. It is also called "trident spine" syndrome because of the three distinct bones in the neck that may be affected by it. These bones are called the atlas, axis, and skull bones. The term "syndrome" means many different things to many people. For some, it means one thing is causing another. For others, it can mean when you add up all the problems with each part of the body. With CHARGE syndrome, there are many physical problems together that cause many questions about how the body works. Learning to read is only difficult for those who cannot do so intuitively like other children. Writing is even more difficult because there are no good tools for these children to use.
Children with CHARGE syndrome often have trouble communicating their needs and desires. This can be due to the presence of head and neck abnormalities that may make it hard for them to express themselves verbally, as well as cognitive limitations associated with this disorder.
Most have hearing, vision, and balance issues, which impede their growth and communication. Despite these seemingly insurmountable challenges, children with CHARGE syndrome frequently outperform their medical, physical, educational, and social expectations.
They are usually born with a severe case of this disorder so many things need to be done for their care. Doctors first noticed that many babies were being born with too much neck muscle when they started seeing them at university hospitals where surgical techniques allowed for better visualization of the head. They also needed surgery to correct problems with their ear canals (tympanic membranes), nose, and throat; and to fix problems with their jaw, teeth, and tongue.
People with CHARGE also have problems with brain development, vision, and balance, which causes some to have learning disabilities. Many become self-sufficient adults but some need assistance due to the effects of the disease. There is no known cure for CHARGE syndrome, but treatment focuses on improving quality of life rather than preventing further symptoms from developing.
Children with CHARGE syndrome often use adaptive equipment to help them communicate and perform daily tasks. For example, they may use a switch box for hand signals or require a large keyboard so they can type messages to friends. Some families build special facilities in their homes for their loved ones with CHARGE to make living more comfortable.
The majority of young children with CHARGE have developmental delays. This is frequently related to sensory deficiencies (vision and/or hearing loss) as newborns and early children, as well as numerous illnesses and hospitalizations. Many children also have cognitive problems such as attention deficit hyperactivity disorder (ADHD), learning disabilities, or emotional issues.
However, many adults with CHARGE find successful careers in the health care industry or through other occupations that require strong communication skills and a positive attitude. In fact, people with CHARGE are about average in terms of earning a college degree.
There is no definitive test for CHARGE so diagnosis is based on clinical findings combined with genetic testing. Doctors use various tools to help them make this determination including electroencephalograms (EEGs) and magnetic resonance imaging (MRI).
People with CHARGE often have physical differences including heart defects, ear problems, extra fingers or toes, and brain abnormalities. Although these are common among people with CHARGE, they do not mean that you will end up with a disability. The severity of these differences varies between individuals.
Many people with CHARGE feel comfortable identifying themselves as having a disability.
CAS is often referred to as "verbal dyspraxia" or "developmental apraxia." Despite the usage of the term "developmental," CAS is not an issue that children outgrow. Without therapy, a child with CAS will not learn speech sounds in the regular order and will make no progress. However, with appropriate treatment, many children with CAS can learn to speak again.
Children who have CAS are able to say some words but cannot put them together into sentences. They may repeat themselves, use incorrect words, or say things like "I don't know" or "I feel." Many children with CAS understand what others are saying but cannot express themselves properly because they cannot coordinate their mouth and tongue muscles correctly. Some children with CAS may show an interest in certain topics or activities but be unable to communicate their thoughts due to the disorder.
CAS can be caused by any of several problems with the brain. The two most common causes are stroke or head injury before age six. Other factors include tumors, infections, hydrocephalus (excessive fluid in the brain), and epilepsy. No single test can diagnose CAS. Your doctor will conduct a clinical examination, ask about your child's symptoms, and review her medical history to determine the cause of the problem. If CAS is found to be the cause, then specific treatments will be recommended for this purpose alone. Otherwise, children with CAS are treated just like other children with speech disorders; however, there is no cure for this condition.