Taking care of a baby with cerebral palsy requires extra TLC. Here's what to expect and how to help your infant with cerebral palsy thrive.
Life with Cerebral Palsy
Every year, up to 10,000 babies born in the United States experience brain damage that leads to a diagnosis of cerebral palsy. Injuries to the brain may occur in utero (when an infant's brain doesn't develop properly), during childbirth (if there is a difficult delivery, a premature delivery, or trauma), or during a child's early years (due to an infection such as bacterial meningitis or a head trauma). Half of cerebral palsy cases have no known cause.
This neurological disorder affects the brain's ability to control body movement, muscle coordination, and posture. "Severe cases may be noticeable at birth, but most children aren't diagnosed until they start missing certain milestones like holding up their heads or rolling over," says Amy Houtrow, M.D., Ph.D., medical director of the Rehabilitation Institute at Children's Hospital of Pittsburgh of UPMC. Cerebral palsy affects every child differently, depending on the extent of the brain injury. "Some children have all four limbs affected, while others may experience problems with their lower half or one side of their bodies," Dr. Houtrow says. "A baby's limbs can be very stiff or very floppy, or move involuntarily."
Feeding. Because low muscle tone makes it more difficult for your infant to hold up his head, you may need to provide extra support while nursing or giving a bottle (and you'll need to do this for a longer-than-normal period of time). When your baby is ready to try solids, an adaptive seating device can provide the head and body support your baby needs.
"Some babies with cerebral palsy have difficulties swallowing and can aspirate, meaning that the liquid gets into their lungs instead of their stomachs, placing them at risk for pneumonia," says Dr. Houtrow, who also serves on the executive committee of the American Academy of Pediatrics' (AAP) Council on Children with Disabilities. If your baby has problems swallowing, you may need to add thickening agents to bottles of breast milk or formula. This agent may be recommended if your baby has gastroesophageal reflux disease, or GERD, a common problem for infants with cerebral palsy. A baby with severe cerebral palsy may temporarily need a gastrostomy, or G-tube, to ensure that she gets the nutrition necessary to thrive and develop.
Sleeping. If your baby has reflux, your doctor may recommend using a wedge cushion in his crib to raise his head when he sleeps. This can keep stomach contents from moving backward into his esophagus.
Reaching Milestones. Cerebral palsy affects each child's motor skills differently. Some children get around just fine unassisted; others move with the aid of a walker; still others may need the help of a wheelchair. You should expect your baby to reach certain milestones like rolling over, crawling, walking, and talking later than typical peers do -- if she reaches them at all. Your baby should be referred to early intervention services, such as physical, occupational, and speech-language therapies, as soon as possible following her diagnosis. States are required to provide these services for free to eligible infants and toddlers up to age 3 through the Individuals with Disabilities Education Act. Therapists can work with your child to improve muscle tone, movements, posture, swallowing, and speech. They can also provide you with physical therapy exercises that you can do at home with your baby and provide tips on how to manage certain tasks, such as feeding.
Learning. Many children with cerebral palsy learn just as well as their typical peers do and have average, or even above average, intelligence. But sometimes problems with movement or speech hinder learning. Therefore, many children with cerebral palsy may have lower-than-average intelligence or specific learning disabilities, or both, Dr. Hubrow says. "A child who is affected on one side of the body may have perceptual problems that make certain tasks -- like doing a puzzle or understanding a map -- more difficult." Therapies provided through early intervention services can help your child master these skills, teach him ways to work around them, or introduce him to helpful learning devices like communication boards or speech-language computer programs.
It can be devastating to learn that your baby has a lifelong disability such as cerebral palsy. A healthy support network composed of family, friends, therapists, and medical experts is vital.
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