Parents of Juvenile Batten Children Find Value in Small Moments of Joy

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Parents of children with juvenile Batten disease face many challenges, but may find value in small moments of joy, a new study highlights.

Juvenile Batten, also called CLN3 disease, is the most common type of the inherited neurodegenerative disorder. Usually starting between ages 5 to 7 with vision problems as a first symptom, patients experience cognitive difficulties, speech impairment, loss of motor skills, and seizures as the disease progresses.

Diseases like Batten have an impact not just on those with the condition, but also on their families. However, there has been little formal research into the experiences of parents and other family members affected by juvenile Batten disease.

To learn more, a team of scientists in Sweden interviewed eight parents — five mothers and three fathers — of five children with juvenile Batten. The parents all were in their 40s or early 50s, with children in their teens or 20s.

“This study is the first to our knowledge to examine the experiences of parenting a child with” juvenile Batten disease, the researchers wrote, noting that their focus was on “its impact on the family system as well as the concept of family resilience.”

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The study, “Parental experiences of having a child with CLN3 disease (juvenile Batten disease) and how these experiences relate to family resilience,” was published in Child: care, health, and development.

Many of the parents reported experiencing feelings of recurring loss and grief throughout the course of the disease, starting from the moment when their child was diagnosed.

“We entered a room with two healthy children and left with one of them dying,” one parent recalled of learning the child’s diagnosis.

The feelings of loss often continued, and sometimes deepened, as the disease progressed, causing some parents to feel distanced from their children.

“He had a lot of psychotic symptoms which was horrible, it took over him completely, which led to us losing him more and more,” one parent said.

Many of the parents expressed a feeling that they didn’t have any opportunity to “recharge” or take time and space for themselves, feeling pressure to always be available for their children. These stresses often put strains on the parents’ romantic relationships.

“Suddenly [a care] assistant gets sick, and you find no replacement and then we have to jump in, so you are like a prisoner, in your own home, and never know if you can make that trip or dinner or go home to someone or something,” one parent said.

Another common theme was frustration with societal institutions that are not set up to support people with progressive diseases or increasing care needs. Parents reported that they’d often sent in new insurance claims before the previous ones had been processed.

“These children should be prioritized in the system and not have to wait in the same way as others,” one parent said. “Because that prioritization does not exist, things happen all the time with deteriorations (in function), so that when one thing is done, then it is already too late.”

Among parents with more than one child, a universal theme was feeling guilt — believing that they had not been fully present as parents for their children without Batten.

“I have my adult son, he is my ‘rock,’ it’s awful to say that I have my son for that,” one parent said.

“Some parents described how siblings longed for a more ‘normal’ existence,” the interviewers wrote.

Parents stressed the importance of trying to make room for siblings’ feelings, even when they are complicated. Some parents said they felt that growing up alongside a child with a rare disease had helped their other children develop a more profound sense of empathy than their peers.

“That part is hard, that [the healthy sibling] sometimes hated [the ill sibling] and that it has to be allowed, that he can have these emotions and express these things, and I have to respond to it in an accepting manner,” one parent said.

Another said that the healthy sibling “has become a much more adult and full human being when compared to peers … It seems that it has made him more responsible, more caring.”

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In the face of these many challenges, some parents said they had learned to derive great value from small moments of simple joy with their juvenile Batten children.

“Several parents recounted occasions when they felt a deep connection with their children during the times they shared,” the researchers wrote. “These moments could be, among other things, small breaks of calm in the middle of an intense outburst of anxiety, a hug, a smile, or a laugh that communicates more than words.”

“I knew he was not with me forever and I was his eyes, I was his voice, I was his, like it was my duty that he should have the best during his time on earth so that was what drove me, the love of [the child] … It really was my life’s purpose,” said one parent.

A number of parents spoke of the importance of finding a support group with others whose children also had juvenile Batten. Many called for improvements to health insurance, and for more readily available support services.

“Results also point to a need for cohesive adult health care, with better communication with families and care staff, as well as increased knowledge about the disease and its impact on the family,” the researchers wrote.

The team said their study showed that most parents were “resilient” in the face of their child’s juvenile Batten diagnosis.

“Parents felt that the disease forced them to reconsider what was important in life, to value small moments of joy and create deep connections through involvement in family routines and rituals,” the team wrote.

“Despite the challenges placed on the family system, it was possible to identify examples of family resilience,” they concluded.