Kernicterus in Adults: Challenges Beyond Childhood

For adults, kernicterus is a matter of living with and managing disabilities. The majority of young survivors of kernicterus will become adults who continue to face varying degrees of impairment. These challenges range from mild to profound cerebral palsy, to hearing loss, to gaze abnormalities and mental retardation.

What can parents expect for their children, as they become teenagers and young adults?

Currently there is no literature regarding life expectancy with kernicterus. It is also not valid to compare cerebral palsy due to kernicterus to cerebral palsy due to other causes.

While one child with severe kernicterus brain damage might never walk and require continuous, lifelong care, another child with subtle damage might be only slightly disabled and, as an adult require little or no special assistance.

Motion Disorders/Cerebral Palsy: Although cerebral palsy itself is not a progressive condition, the symptoms may change as the individual grows and matures. Due to extra stress and strain upon their bodies, as young adults these patients tend to age prematurely. They may experience osteoarthritis or degenerative arthritis, and pain to their hips, knees, ankles and backs. Challenges at the workplace may become more difficult the older they become, and pain, fatigue and weakness due to muscle abnormalities and bone deformities make it even harder to function.

The importance of effectively managing cerebral palsy caused by kernicterus throughout childhood, teenage and adult years cannot be overstated. Much can be done to improve a person’s mobility and independence, and all efforts made will serve each person in adulthood. Along with the support of family and friends, management requires early intervention programs, individualized education plans, special housing, therapy, assistive technology training, social and recreational programs, integration into the community, and advocacy for employment assistance. 

Hearing Loss: Just as important, the need to aggressively support the person’s need to manage kernicterus hearing loss is critical to all areas of life. The majority of deaf children and adults are in fact quite smart; the only thing they struggle with is learning how to communicate.

Behavioral or Cognitive Needs: In addition to the physical challenges, kernicterus in both adults and children can result in behavioral and emotional problems. Resultant cerebral palsy and other complications may evoke unpredictable behavior including overreaction to stimuli, irritability, or hyperactivity. Some individuals may have difficulties with abstract thinking, including the ability to solve problems or draw logical conclusions.

An Ecosystem of Independence and Progress for Adults with Kernicterus

Most people tend to concentrate on how to help and nurture children with such problems. For parents with brain-injured children, this is their reality. Ratzan Law Group believes that knowing the magnitude of these children’s special needs is empowering. These families need strength, support and advocacy in order to prepare for and help their children become adults who can handle kernicterus disabilities with maximum promise.

We should also remember that many programs available to children with cerebral palsy and other disabilities cease to aid them when they “age out” of programs and are no longer minors. Adult specialty and home care services must be considered in adult years.

Organizations For Outreach and Support of Children and Adults With Kernicterus

Dedicated family care combined with assistance from public and private agencies, such as community health agencies, health organizations and vocational rehabilitation organizations can help adults with kernicterus reach their highest potential.

The resources below offer reliable information and support for families who are living with kernicterus victims:

United Cerebral Palsy (UCP) – Non-profit organization committed to advance the independence, productivity and progress for adults and children with cerebral palsy and other brain injury. 

http://www.kernicterus.org/ - Hosted by Dr. Steven M. Shapiro MD, MSHA; Professor of Neurology, Pediatrics, Physical Medicine and Rehabilitation, Department of Neurology, Medical College of Virginia Campus, Virginia Commonwealth University Medical Center. 

www.pickonline.org – P.I.C.K. - Parents of Infants and Children with Kernicterus. Founded in 2000, this is a parent-run non-profit organization dedicated to preventing and treating kernicterus.  


 

Ratzan Law Group exists because we believe in seeking and speaking the truth. Our firm shares an intense commitment to find justice for victims of birth injury. Kernicterus is 100% preventable. For families who must deal with this injury, we are your steadfast advocates. For future parents, we believe the answer to ending kernicterus in adults and children rests with prevention.