The ins and outs of raising children with hypoxic-ischemic encephalopathy (HIE) can sometimes seem daunting, but careful planning can help make things a little bit easier. Each child with HIE has unique needs, depending on the severity of their brain damage and the associated conditions they experience. Beyond receiving care for medical concerns, it’s important that children with HIE and other disabilities have equal opportunities to play, learn, laugh, and have fun. Ensuring these opportunities are available and accessible may require foresight and flexibility.
Although each child’s situation is different, there are some general caretaking considerations to keep in mind when it comes to daily living with HIE:
- Home modifications: Children with disabilities, especially those who use assistive equipment like walkers and wheelchairs, may not be able to access all parts and features of a standard house. Many parents decide to make home modifications. On our home modifications page, you can learn more about how to determine what types of modification your child may require, as well as information on programs that can help them be more affordable.
- Record-keeping: Parents of children with HIE may want to keep careful records of their child’s progress and setbacks, in order to evaluate the effectiveness of various care strategies. This includes documenting medical appointments and treatments, as well as information about special education, financing, and more. On this page, we provide a few tips on how to organize these notes and ensure that you have access to all the relevant information.
- Communication: Children with HIE may have communication difficulties stemming from intellectual impairments, hearing problems, or speech and language disorders. On this page, we discuss augmentative and alternative communication systems (AACs) and other solutions.
- Hobbies and activities: Having hobbies and participating in fun activities can help children develop skills related to social interaction, language use, fine and gross motor function, and cognitive/emotional development. Here, we list just a few types of activities that children with HIE and other disabilities may enjoy.
- Socialization: Children with HIE may have limitations or delays in socialization, the process by which they form their own identity and learn social skills and norms. Here, we provide information on the importance of socialization, as well as how to maximize your child’s social experiences.
- Health and fitness: Basic health and fitness is important to everyone, including children with disabilities. On this page, we focus on exercise, diet, and sleep as they relate to children with HIE.
- Personal hygiene and grooming: Some children may easily pick up habits like brushing their teeth and combing their hair. Others may struggle to complete these tasks, or be resistant to hygiene and grooming routines due to sensory processing issues.
- Eating, nutrition, and meal planning: Children with HIE may have difficulty eating due to dysphagia, dysfunction in the esophageal or gastrointestinal muscles, or for other reasons. Here, we discuss interventions that can help children with HIE eat comfortably, as well as alternative forms of food intake such as feeding tubes. We also discuss digestive health, nutrition, and meal planning.