When Lillian Grace Salerno was a year and a half old, she wasn’t climbing the furniture. She wasn’t walking. She wasn’t speaking. And she was suffering up to 300 seizures a day.
Medication wasn’t working, and experts proposed an astonishing treatment in order to save the little girl’s life: remove half her brain.
A recent article on FoxNews.com describes the Salerno family’s journey. As a newborn, Lillian Grace seemed normal. She first showed signs that there might be a problem around six months of age. “She wasn’t reaching milestones,” explains her mother, Sandra Salerno.
Through dogged investigation, the Salernos found out that a rare virus called CMV had infected Lillian Grace in utero. An MRI of the baby’s brain at eight months revealed that the virus had devastated more than 90% of its right side.
But why would that part need to be removed? Dr. Neil Feldstein, director of Pediatric Neurological Surgery, explains:
There are a number of rare but devastating conditions seen particularly in infancy that cause catastrophic epilepsy. In these instances, medication cannot control the seizures, and the babies cannot acquire normal developmental milestones. Under these dire circumstances, removing or disconnecting the affected side of the brain can stop the seizures.
But what about those developmental milestones? Surely removing or disconnecting an entire side of the brain would prevent a baby from ever reaching those? In fact, this is not the case. Once the seizures stop, infant’s brains are incredibly ready to adapt. Dr. Feldstein continues:
In infants, this can be very well tolerated. Due to the high degree of recovery, or plasticity, seen in this age group they can recover near-normal function over time. In our epilepsy center, we have treated many such infants and children. While the anxiety and stress on the parents and families is enormous, the end results have been uniformly successful and the families ecstatic.
And such was the case for the Salernos. “Post-surgery, she’s a different child than she was before,” says Sandra about Lillian Grace. “She’s very active, loves playing with dolls, likes to try to do everything that her big sister does. She’s walking now…she never was able to walk before we did brain surgery, so her personality has really started to come out.”
The article about Lillian Grace has been making the rounds on the Internet, educating its readers about the rare virus, CMV, that caused such trouble for her. Dr. Feldstein hopes that readers also come away knowing more about the full range of options available for treating catastrophic epilepsy.
Clearly such surgery cannot be contemplated lightly. But I would encourage families whose children have such persistent epilepsy to seek out opinions from pediatric epilepsy centers to see if all options for their child are being investigated.
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