On her six-month birthday, little Aurora woke up having a seizure – the first one of her life.
“I have never felt fear and shock like that,” said Kayla, Aurora’s mother.
The baby and her parents, who were in Canada for the holidays to see family, were transported to the nearest children’s hospital in Halifax, Nova Scotia. The neurologist there treated her with care and arranged follow up for when the family returned home to northwest Indiana. He told the family to seek further specialized pediatric epilepsy care at Ann & Robert H. Lurie Children’s Hospital of Chicago. He was confident Aurora would receive thoughtful and state-of-the-art care at Lurie Children’s; this Canadian doctor had done his own specialty training there himself.
After evaluation at the Comprehensive Pediatric Epilepsy program, specialists at Lurie Children’s defined the problem. Electroencelephalography (EEG) along with advanced imaging techniques found a large malformation on the left side of the little girl’s brain that was causing the seizures. Even after escalating to multiple medications to get the disease under control, Aurora's seizure count went up to sometimes 60 seizures a day. Aurora was diagnosed with medication-resistant intractable epilepsy.
A Pioneer in the Field at Lurie Children’s: Sandi Lam, MD
Surgery was going to be Aurora's best treatment option to get her seizures under control and to give her the chance to achieve her full potential. For Aurora's condition, a hemispherotomy (sometimes also referred to as hemispherectomy) was the recommended surgery. Aurora's parents were understandably worried about the prospect of their little girl undergoing brain surgery. They did some research and realized that one of the few neurosurgeons in the world offering minimally invasive endoscopic hemispherotomy surgery, Dr. Sandi Lam, had recently arrived as the chief of pediatric neurosurgery at Lurie Children's.
The Procedure: A Minimally Invasive Endoscopic Hemispherotomy
In a hemispherotomy, half a patient’s brain — the one where the seizures originate – is disconnected or removed, so that the seizures cannot propagate to the other side of the brain. Since the right side of her brain was her only "good" side, it was important to stop the seizures from spreading there. Because Aurora was just seven months old when she was to have surgery, the untouched right side of her brain would compensate well, as it has a lot of plasticity, and would take over many of the functions of the left. The left side was the cause of all of her seizures, which were getting worse even with multiple medications.
The traditional hemispherectomy surgery involves a large opening on the side of the head to allow the surgeon to see and to reach all of the brain structures. More recently, minimally invasive endoscopic hemispherotomy surgery options have been introduced; they are performed by fewer than a handful of surgeons. Endoscopic hemispherotomy uses only a small opening, and the endoscope acts as a thin surgical camera to let the neurosurgeon see and perform the surgery: this minimally invasive approach enables patients to have a much easier recovery, with less blood loss, less swelling, and less pain.
While the family was taking in this information, Aurora's seizures were taking a turn for the worse, even more than 60 a day. She had a breathing tube to help maintain her breathing while being on sedating medication, which was necessary because of the uncontrollable seizures. Her nutrition was supported by a feeding tube.
“Even after one conversation with Dr. Lam though,” said Kayla, “when we were at our lowest point in terms of being scared and confused, Cody and I looked at each other and said, ‘that is the woman who is going to save our baby’s life’. We had no more doubts after that. We knew we were in the right place."
Soon after, Dr. Lam performed the big procedure. At the end of it, the parents were looking at only a four-centimeter-long wound at the top of the head, barely visible in between her hair. She has had no more seizures since surgery.
‘She Saved Our Little Girl’
Today, Aurora’s seizures have completely stopped. She is eating normally without a feeding tube, and is doing more than ever, much more than before surgery. She is an active, happy and inquisitive baby: babbling, sitting, rolling and crawling around, using both left and right sides of her body. Her right side was expected to be weak right after surgery and to get stronger with therapies over time. Within a few days after surgery, she was already moving the right side a lot. That means her brain had already started switching the function from the bad seizing side over to the good untouched side - even before the surgery.
"Aurora and her family are wonderful people,” said Dr. Lam. “I am so glad she was able to come from Indiana to Lurie Children's in Chicago: we have a whole comprehensive pediatric epilepsy program to help diagnose and treat children with seizures. Her type of problem made her a great candidate for hemispherotomy surgery: especially for a small child in which priorities include minimizing blood loss and getting on the road to recovery and therapies as soon as possible. Minimally invasive surgical technique makes a lot of sense, and Aurora has done so well.”
She has started some occupational, physical and speech therapy, which will continue to enhance her recovery over the next several months.
Follow-up: Telemedicine Appointment Options
At four months after surgery, Aurora and her family can check in via Telemedicine with her epilepsy neurologist and her neurosurgeon. Aurora waves happily at her doctors on the screen with the easy-to-use application for Telemedicine, all from the comfort of her own home while her parents beam right next to her.
“Aurora has a long road ahead of her, but she is a very strong little baby and has a great outlook,” Cody said.
Cody said he and Kayla are still recovering emotionally from the past few months but are thankful their baby had access to Lurie Children’s and care from Dr. Lam, a pioneer in the type of surgery that saved their daughter.
“Dr. Lam is an amazing person and we wouldn't have wanted anyone else by our daughter’s side during this time,” Cody said. “She saved our little girl!”