When Caren was eighteen years old her parents were, in fact, given two options. If they were unwilling to consent to a lobotomy, Caren would remain in the dark ward of an institution strapped into a straitjacket.
As her sister Nancy Kessler explains in a recent article published in the Sand Paper of Long Beach Island, the lobotomy took place in the 1960s before the IDEA law took effect. The law ensures education and special services for children with disabilities. Nancy also tells the story of Caren’s life in a documentary called “Celebrating Caren.”
A Wide Range of Symptoms
Caren began to have seizures paired with physical and developmental issues when she was seven months old. Yet her rare genetic disorder was not diagnosed until she was eighteen years of age.
At the age of six, Caren received a diagnosis of ‘mental retardation’ with intellectual disability. Nancy also remembers that Caren’s behavior was unmanageable.
Caren’s diagnoses ranged from mental retardation, speech, motor, and global development delays, plus severe aggression. With four children to raise, Caren’s behavior weighed heavily on her parents. Nancy gradually took over the care of her older sister and eventually spent thirty-five years teaching and caring for children with special needs.
Nancy credits her time spent with Caren for providing her with a deep understanding of the problems families face in caring for special needs children.
At Home Care vs. Residential School
Caren’s parents did all that they could to keep Caren at home, but it was evident that Caren needed professionally qualified individuals who would be able to control her behavior. As a result, Caren was sent to a North Jersey residential school.
Caren learned phonetic reading, simple math, and other skills, but even her instructors were unable to prevent her outbursts.
When Caren was eleven and until she was seventeen, Caren lived at a Catholic residential school in Pennsylvania. She loved coming home to see her family and enjoyed the beach, boating, and simply walking along the water’s edge.
Yet at times Caren’s actions became even more ‘bizarre’. She was diagnosed as having organic brain dysfunction. Nancy recalls her older sister tied into a straitjacket in some of the residential institutions for her own safety and that of others. As a teenager, her aggressive tendencies worsened and overwhelmed the staff.
When she was eighteen, at the urging of the residence, Caren’s parents took her to Dr. William Beecher Scoville in Hartford. A lobotomy was performed causing partial amnesia. Caren now has trouble with new memories, but she can remember childhood events. In addition, her seizures appear to have become more severe.
After the surgery, Caren entered an institution in Vineland and remained there until 2013. Life was a little more enjoyable for Caren at Vineland. She often appeared in the school newspaper, at the school’s Special Olympics, and joined others in the community on their many outings.
Administration changes at Vineland prompted the family to move Caren to a group home where she has remained since 2019.
Then in March of 2020, Caren was diagnosed with COVID-19. She was unable to eat and was close to death when Nancy received a call from the hospital that Caren “made it through”.
And Now the Diagnosis
Dr. Darius Adams, Caren’s geneticist, tested Caren in September 2019. His first approach used CMA, chromosomal microarray with negative results.
Dr. Adams then followed with Trio Whole Exome Sequencing. This test is usually administered to parents, but Caren’s parents were deceased. Therefore, Nancy and another sister, Jennifer Hirschfeld, took part in the testing which involved sequencing the genome’s protein-coding areas.
The test results found that Caren had synGAP1 which is a rare genetic disorder affecting only two hundred Americans and eight hundred people in the entire world.
Caren is now sixty-five years old and known to be the oldest person alive with synGAP1.
Saturday, August 1st, Caren will pay a visit to her family at their home in Beach Haven and meet with other synGAP1 patients and their families.
Nancy explains that her goal in creating the documentary is to find other families that have not yet received a diagnosis. She said that she knows there are other ‘Carens’ out there.