I was still in bed at 8:05 in the morning when my daughter Kristen called and calmly said: “I think Gracie is having a seizure. The ambulance is taking her to St. Luke’s.” Kristen’s slow, steady speech told me we were a family in crisis.
By 8:15 I was at the hospital. A nurse was trying to get an IV needle into my two-and-a-half year old granddaughter’s tiny hand. Grace was in grand mal seizure. Every part of her body was convulsing. Her eyes in were open in a fixed gaze and foaming saliva came from her mouth. This image haunts my daughter whenever she thinks of the day. She shakes her head and closes her eyes, as if to make the memory go away forever. We gave away the pretty flowered pajamas she was wearing (our favorite until then) to help us forget.
Our baby, my daughter’s first child, my first grandchild, was still seizing at 9:00. As a nurse, I had learned most seizures lasted two to three minutes. Any seizure lasting longer than five minutes was considered prolonged, dangerous.
The staff of the community hospital was obviously uncomfortable working on a tiny toddler. The emergency room physician told the EMT that he should have gone to Children’s Hospital. The young medical technician said: “I couldn’t. She wasn’t stable.”
I remembered to tell the doctor that Gracie already had a neurologist. She had suffered traumatic birth injury, but we had not seen seizures since the day after she was born, when she had a stroke because of damage to her right temporal and parietal lobes.
When neonatologists showed us films of Grace’s brain injury less than two days after she was born, we were devastated. They could not tell us if she would walk or talk. “She may learn differently,” they said after a long pause. My daughter reacted by pacing the floor, pounding her feet, marking time to her mantra, “Nobody’s gonna label my baby!”
So far, until this day, this unrelenting seizure, there were no obvious signs of problems from that damaged area.
Now the emergency physician was telling us it would take a while for the pediatric neurologist to call back, maybe half an hour. “It always does,” he said.
Thankfully, the neurologist called within minutes, giving us hope the seizure would soon be controlled. He ordered two intravenous doses of Ativan to stop the convulsions. When Grace’s body relaxed and she appeared to be sleeping, Kristen asked if her baby’s seizure had ended.
“We can’t tell what’s going on inside the brain,” the doctor said, “but the symptoms have stopped.”
By 10:00 an ambulance and pediatric intensive care nurse arrived from Children’s Hospital to transfer Grace to their pediatric intensive care unit across town. I don’t think I can ever forget how tiny and helpless she looked on that stretcher, not resisting and not responding. Kristen rode in the front of the ambulance, keeping her eye on Grace through the window behind her seat. How Kristen kept her composure, only a mother can guess. She had to. She’s the mom, on high alert, in crisis mode.
Grace awoke late in the afternoon in ICU. How confusing it must have been for her! The last thing she could have remembered was going to sleep the night before. She was limp, and couldn’t stand. I thought it was due to the drugs, but I realized (it took more than 2 days for her to get her strength back), that her body must have been as exhausted as a child who would have run miles and miles.
We stood by Grace’s white iron hospital crib, talking to the neurologist and worrying what the damage might be from lack of oxygen, though Grace had remained unusually pink during the entire episode. The neurologist was telling us about his son, who had been Kristen’s classmate in sixth grade. He said his son and daughter-in-law had adopted a girl from Bolivia and she was now 5 years old.
We had been talking in near whispers. Grace, who had been quiet up to that point, said: “Mom, I’m not five! I’m only two and a half!”
“Well,” said the neurologist, laughing and turning up his palms as if to present a gift,” there’s your answer.
The next two days, Grace kept asking to go home.”Mom, I need to go home to that green house,” she said and she named her town and state.”
Apparently, her advanced verbal skills had not been compromised. The MRI showed that the seizure was “a focal seizure” meaning that it came from a specific part of the brain. In this case, it was caused by activation in the scar tissue of the area damaged at birth. This was good news! The scans from this episode and the one at age 31 hours (birth) showed no further damage or troubling area!
Just to be safe, an anti-convulsant medication was prescribed for six months, then a different, milder medication until age five. We wondered about side effects, but Kristen never missed giving Grace her medication. It was a matter of weighing risks.
Grace is now ten years old and does not need medication. She is in the 98th and 99th percentile in reading and math. She plays piano, has a green belt in karate and swims on a pre-olympic team. She is a better artist and writer than her grandmother. None of these are labels. They are miracles, miracles that happened because science and a mother’s determination to see her daughter as undamaged allowed her to become who she was born to be.