Growing up with Epilepsy: Caroline's Story

When Caroline, now 6, was just three months old, her parents, John and Mary Gene, noticed her making unusual, repetitive movements and thought immediately that these movements might be seizures.

Epilepsy and the Family: Impact on Siblings

Caroline was brought in for an EEG, which confirmed that she was having a very serious type of seizure called infantile spasms. The EEG was followed by an MRI to look at her brain anatomy, with the hope of determining the cause of her seizures.

The MRI showed an abnormality in the corpus callosum, or the thick band of nerve fibers connecting the right and left sides of the brain. Most of Caroline's corpus callosum is missing. She was also found to have abnormal tissue in the retinas of both of her eyes. These three clinical features—infantile spasms, the brain abnormality, and the coloboma, or absence of normal tissue in her retinas—allowed doctors to diagnose Caroline with Aicardi syndrome, a very rare neurological disorder that affects only girls. Although the gene has yet to be identified, Aicardi syndrome is thought to be a genetic disorder.

Epilepsy Is a Family Issue

The symptoms associated with Aicardi syndrome have dramatically affected Caroline's family, including her sisters, Abigail, age 11, and Cassie, age 9. All girls with Aicardi syndrome experience developmental delays ranging from moderate to severe intellectual disability. Caroline is considered moderately affected by the disorder and is relatively high functioning. Still, she has significant developmental delays and behavioral difficulties such as irritability, impulsivity, and attention deficits.

The symptom that has had the greatest impact on Caroline's family is her epilepsy. She continues to have partial seizures that are very difficult to control, which is not unusual for girls with Aicardi syndrome. Her seizures often make daily life unpredictable, resulting in family stress and anxiety.

Mary Gene comments, "I think epilepsy is a real family issue because it does affect everyone in the sense that we don't know what's going to happen from day to day. There's a lot of worry, not just from us, but from Caroline's sisters. And their worry will be as small as, you know, 'Gee, I hope everything goes OK and we can actually make it to the playground today,' to, 'Is she going to have a seizure and not come out of it?' And that's deeply ingrained in all of us. And because we can't control her seizures, we never stop feeling that way. I always say we all live in sort of a heightened state of alert, sort of waiting for what might happen."

Siblings Are Often the Forgotten Players

Attending to the needs of a child with epilepsy can demand a lot of time and energy from parents. But even the most vigilant parent may sometimes be unaware of the impact epilepsy has on the child's siblings. It is not unusual for siblings to have feelings such as guilt over the fact that they are healthy, embarrassment when their sister or brother has a seizure or acts inappropriately in public, worry and fear about their sibling's health, or anxiety when a parent goes to the hospital with their sibling.
Learn more about epilepsy and family life

Abigail comments, "Sometimes it's embarrassing when Caroline has a fit or she has a seizure and people are staring at her, and I get embarrassed because people are staring at me too. And sometimes I feel sad because she doesn't want people staring at her."

Cassie adds, "Sometimes I cry. I get really scared sometimes, and I ask my mom, 'Is Caroline going to be OK?' And if she has a really long seizure, sometimes she says, 'I don't know,' and that scares me."

Sibling Support

John and Mary Gene realized that Abigail and Cassie were struggling with understanding and accepting Caroline's epilepsy. They wanted to find a way to address their daughters' concerns and help them feel less alienated and scared. The parents also wanted to help strengthen their daughters' relationship with Caroline so that they wouldn't feel resentment toward her later in life.

Psychiatrist Nicole Danforth, MD, explains, "What we really want parents to do is to put the worry out on the table, as it were, for the entire family, and to ask the family to talk about how everybody's feeling about the epilepsy. Because families know one another better than anyone else in the world, and that can become a real source of support as opposed to a source of resentment or disappointment."

John and Mary Gene understand the importance of teaching their daughters about epilepsy. They have created a home environment where talking about epilepsy is encouraged, and where everyone can ask questions and share their feelings as well as support one another. Additionally, John and Mary Gene learned about a sibling support group and thought it would be a great way for their children to interact with other kids who might be dealing with similar issues and feelings. The group has had an overwhelmingly positive impact on Abigail and Cassie.

Abigail says, "Me and my sister go to a group, and it's called the Sib Shop, and we go and you talk about your brother or sister, and you learn about other kids' problems that they have with their brother or sister, and you know that you're not the only one who has that problem, and it makes you feel better. When I come out of a Sib Shop I feel really good about myself."

Finding Balance

John and Mary Gene are careful to make sure that epilepsy doesn't take over their lives. They not only find time to nurture each other, they are also careful to honor each child individually.

Psychiatrist Nicole Danforth, MD, comments, "We encourage parents to remember that you are a parent of all the children in your family, and that the child who doesn't have epilepsy has his or her own strengths and his or her own interests, and those need to be nurtured just as equally as that of the child with epilepsy."

John and Mary Gene encourage each of their children to develop her own interests, and whether it is a piano recital or a gymnastics show, they encourage the siblings to support one another. Recently Caroline had the opportunity to participate in a soccer program for children with disabilities, and her sisters were there on the sidelines cheering her on.

Mary Gene adds, "Typical siblings have issues with who gets more attention than another, and when you have a child who has a medical situation, they need more attention at times. Because of that we stop and consciously make decisions and make an effort to make sure that there's some balance. I think it is what we work the hardest at, balancing a child with epilepsy and two other typical kids."

To learn more about Aicardi syndrome, visit the Aicardi Syndrome Foundation Web site.