Parenting a Child With Cerebral Palsy

mom sleeping with newborn

Welcoming a new baby into the home is generally a positive and hopeful experience. Parents have great plans for the future of the child and look forward to each new developmental phase. But for parents of four out of every 1,000 children born, the developmental phase turns out to be a disappointment.

As the first few weeks pass, parents begin to notice their child is not performing as they expected. Behaviors that require motor skills, such as smiling, turning over, sitting up and crawling, are not present. The baby may seem flaccid or, on the other hand, its muscles may seem tense and never relaxed. The child may have a seizure.

The pediatrician examines the baby thoroughly and runs some tests on its brain, such as an MRI or CT scan. The diagnosis: cerebral palsy (CP). Parents are puzzled and often overwhelmed and distraught. What is CP and how did their baby get it? They wonder what they should do next.

What is CP?

Cerebral palsy is not a disease but a neurological condition that is caused by damage to the area of the brain that controls movement. The severity of the condition depends on the severity of the damage. There are different ranges of the condition, from mild to severe. This means there may be some who just have balance problems and difficulty in walking, while others may spend their lives in a wheelchair.

According to the Centers for Disease Control and Prevention (CDC), nearly 60 percent of children with CP learn to walk independently. Almost one-third are limited in their walking ability and likely cannot walk at all. The remaining 11 percent can walk with assistance.

There is no one-size-fits-all statement about how a child with CP will be affected. Some have seizures, some do not. Some may have no motor control at all and have difficulty controlling their bowels and bladder. Some may have trouble swallowing and talking.

It is a condition that does not get worse. Once it is identified and the diagnosis made, parents do not have to worry about their child losing more motor control. They can focus on therapy that can maximize and maintain the motor control the child does have.

What causes CP?

When parents first learn their child has CP, the first question is almost always, “What caused it?” In many cases, there is no identifiable cause. In others, something happened prior to the birth that deprived the developing baby’s brain of oxygen. The most common causes are:

  • Premature babies who have a low birth weight.
  • The mother had a serious viral infection during the early developmental phases of pregnancy. The most common culprit is German measles, or rubella.
  • Babies who are born breech, which means the feet come out first instead of the head. This can result in decreased oxygen to the brain and cause damage to the motor area of the brain.
  • A complicated and prolonged labor and delivery causing respiratory problems in the fetus leading to deprivation of oxygen to the relevant part of the brain.
  • Developmental problems in the brain that occurred during gestation.
  • Medical malpractice resulting in inadequate oxygenation of the baby’s brain. This most often occurs during a prolonged labor and delivery when there is a delay in performing a cesarean section. Other causes may be inadequate monitoring of the fetus during labor or damaging the baby with forceps during delivery.

Adjusting to having a child with CP

Parents go through a grieving process and often ask, “Why me? Why my child?” That process may continue for a long time. Meanwhile, parents need to focus on the strengths of the child and not on the limitations. Physical and occupational therapy can help children with CP develop their potential. Some may need speech therapy. All therapists work in their specific areas to help children strengthen and develop the skills they do have.

Additional emotional and financial support

Taking care of a CP child is a lifetime undertaking. Parents need the help of their pediatrician and other members of a medical team. Social workers can help parents find funding for the expenses incurred, and teachers can help with special education. In addition, parents can find emotional support and other resources through various organizations and parental support groups. A few of those include, but are not limited to:

  • http://www.ucp.org/: An invaluable resource for resources. It helps parents find financial resources and parenting groups for emotional support in their geographical area, and it has the latest information on medical advances in treating CP.
  • Kidshealth.org: This site provides general information and suggestions for daily living.
  • http://www.livingwithcerebralpalsy.com/: This site provides information, testimonials and direction to available resources.
  • Care.com: Parents can find detailed information about therapies available as well as links to additional resources, including ones for emotional and financial assistance.

Dr. Charles Bowersis a retired OB/GYN with more than three decades of medical experience. He now works as a medical forensics evaluator for Philadelphia-based Ross Feller Casey, LLP

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