SUMMERVILLE – Just behind Laci Robinson’s left ear and below her hairline is a thin patch of smooth skin – a scar that’s the only outward sign that there’s something different about the 35-year-old. Summerville.
“It’s one of those hidden disabilities,” her mother, Reverend Lisa Robinson, said of the congenital hydrocephalus that has plagued her daughter since birth.
The condition results from the body producing too much cerebrospinal fluid, which accumulates in brain cavities called ventricles and can create pressure on the brain. It affects about 1 million adults and children in the United States, according to the Hydrocephalus Association, and most often appears at birth, as is the case with Laci, occurring in one in every 770 babies. It can also develop later in adults. It can impact memory and learning, behavior, vision, and cause headaches and pain.
It is increasingly thought to be a problem in older people, where it can cause problems with walking, bladder control or even dementia, according to the association. Laci’s grandfather was believed to have developed it late in life before he was eventually diagnosed with Alzheimer’s disease, Lisa said.
In Laci’s case, it was obvious from birth that something was different. After giving birth by C-section “there was a lot of commotion and talking and they ran down the hall with her,” Lisa said. “I didn’t see her until 12 hours later in the incubator, with all these tubes coming out of her.”
Doctors explained that Laci suffered from hydrocephalus, which was why her head was enlarged.
“I had never heard of it,” Lisa said.
Her newborn would need surgery a few days later to install a shunt, an internal tube that can divert fluid from her brain to her abdomen where it can be absorbed. This is the most common procedure. However, it can also lead to many complications.
“There are infections, there are dysfunctions,” Lisa said. “There are so many things that can happen with this shunt.”
Some patients have undergone hundreds of procedures related to their shunts to address these common issues, although Laci only had it once after her initial surgery.
“She just got blessed,” Lisa said.
Laci’s second surgery came out of nowhere when she was 14 years old. At a dinner party in Atlanta at his uncle’s house, there was another child with hydrocephalus and the mother casually mentioned that they were about to visit a neurosurgeon, who turned out to have done the Laci procedure for years. forward to Cleveland. After reconnecting with that doctor, he suggested having Laci rechecked once the family settled in Charleston. While the checkup appeared to be going well and Laci had no symptoms, the family had barely returned home when the doctor’s office called and asked them to return immediately after getting the test results.
“It’s an emergency. Her tube came off,” Lisa said.
As an associate pastor at Mount Moriah Missionary Baptist Church in North Charleston, she believes it was no coincidence that Laci was examined at that time.
“God intervened in this situation,” Lisa said.
For his part, having grown up with his condition, Laci chose not to publicize it.
“I didn’t know how to talk about it at school,” she said. “Even in college.”
But Laci knows it had an effect, both academically and socially, mostly due to her memory and her ability to follow the steps of a task.
“I found it difficult to communicate, to communicate verbally, to express my feelings,” she said.
Laci knows what she would like to say but can’t find the words. It was only recently that a neurologist gave his condition a name: aphasia. Despite this, Laci graduated from college with a degree in graphic design.
“That’s what I want to do” as a career. For now, she works as a cashier at Lowe’s. Still, she helps with charts and flyers at church and recently designed one for the June 19 celebration in Mount Pleasant.
“She does a lot of flyers for church and gets a lot of compliments,” Lisa said.
Laci’s self-confidence might be one of his biggest obstacles.
“I erected my own barriers,” she said. “I stop for fear of ruining everything or things like that.”
This is one of the reasons she and her mother want to help form a support group or network so other Lowcountry families can access and learn about available services and help.
Families, when they connect, often have a lot of questions, Lisa said.
“People want to know, ‘Where are the neurosurgeons? Where can I go with my child?'” Lisa said.
They also have questions about Individualized Education Program Plans, which are detailed instructions required for children in special education. It can be a frustrating meeting for parents arranging one with school administrators and teachers, Lisa said, a process she has gone through several times with Laci. That’s why one of the services she thinks parents could use is another seasoned parent who could accompany them to these meetings.
“Not to speak for them, but to let them know, ‘I’m here with you. I’ve been through that,'” Lisa said.
When they became co-leaders of the community network, the Robinsons had many plans, including a walk in the Lowcountry to raise awareness.
“And then the pandemic hit,” Lisa said.
Now may be the time to revisit those plans and start building that awareness, she said.
Starting with this: “It’s very common and anyone can get hydrocephalus,” Lisa said. It may not be obvious to everyone.
