Awareness of Birth Defects Across the Lifespan: Childhood
Meeting the complex needs of a person with birth defects involves the whole family and can be challenging at times. But finding resources, knowing what to expect, and planning for the future can help. Early intervention services and supports include special education, speech therapy, and physical therapy; these can have a significant impact on a child’s ability to learn new skills, overcome challenges, and increase success in school and life. Below is a brief description/examples of what children living with certain birth defects may experience as they grow up.
- Many children with heart defects do well in school. However, some CDC research shows that children with heart defects may be more likely to
- have difficulty with learning, focusing, and communicating
- miss more than 10 days of school in one year
- have trouble participating in sports or clubs
- Children with heart defects, who didn’t have any other birth defects, are more likely to need special education services than children without heart defects. Certain conditions requiring special education needs are more common among children with heart defects:
- intellectual disability
- problems with hearing or seeing
- developmental delay
- learning disability
- limited alertness in school
- Most children with heart conditions receive preventive care, but fewer than half have a medical home. A medical home is an approach to providing medical care that supports partnerships between patients, medical staff, and families. The patient has a relationship with a personal physician and a care team that’s responsible for providing and arranging the patient’s health care needs. Children with heart conditions are less likely to have a medical home if they are younger, of a racial/ethnic minority group, or have multiple medical conditions.
- Many children with spina bifida do well in school. However, some children with spina bifida can experience difficulties, especially children with shunts that are used to treat hydrocephalus (often called water on the brain). These children often have problems with learning and might have difficulty paying attention.
- People affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs. A physical therapist can work with children, parents, and caregivers to teach them how to exercise the child’s legs to increase strength, flexibility, and movement.
- Muscular dystrophies (MD) are a group of rare muscle diseases caused by changes in a person’s genes. Over time, muscle weakness decreases mobility, making everyday tasks difficult. There are different types of MD with signs and symptoms that can appear at different ages and with varying severity. Limited data are available regarding how many people are affected. CDC is working to estimate the number of people with MD in specific areas of the United States.
- Parents can spend years taking their child to different doctors before getting a diagnosis of MD. Early screening and identification can reduce this “diagnostic odyssey,” decreasing the number of tests for a correct diagnosis. Early identification can also ease access to early intervention programs or special education resources. CDC has collaborated with partners to design diagnostic tools for families and physicians to help reduce the time needed for diagnosis.
- Even though people with Down syndrome might act and look similar, each person has different abilities. People with Down syndrome may have an IQ (a measure of intelligence) in the mildly-to-moderately low range and may be slower to speak than other children.
- Children with Down syndrome may need physical, occupational, and speech therapy to help with their development. Many children with Down syndrome learn in regular classes and actively take part in play and childhood activities, both at school and in their community.
- About half of all babies born with Down syndrome are also born with a heart defect. Children with Down syndrome can be affected by a wide variety of heart defects. It’s important that all people living with a heart defect receive lifelong, ongoing specialty medical care for their specific heart defect.
Some babies born with birth defects may also have physical and intellectual disabilities. Specifically, research has shown that children with cleft lip and cleft palate, craniosynostosis, microcephaly, and encephalocele can benefit from developmental services that improve their physical and intellectual abilities.
The exact ages of developmental milestones are different for each child. As a parent, you know your child best. If you think there could be a problem with the way your child plays, learns, speaks, acts, or moves, talk to your child’s doctor and share your concerns. Families, educators, and healthcare providers can work together to set meaningful goals and create a plan to help children living with birth defects reach their full potential.