Ella Grimes is an on-the-go toddler who loves playing with her sisters and often pretends she is a doctor, a role she knows all too well. The 4-year-old has been in and out of the hospital most of her life.
“Ella was born healthy and was a very easy baby,” said Ashley Grimes, Ella’s mom.
So easy, in fact, that she rarely cried. But in January 2010 at 8 ½ months old, everything changed.
“She began throwing up and was not acting like herself at all,” Ashley said. “After a day of this, she was becoming increasingly lethargic and just wanted to be held. We knew something was wrong and called 911.”
Immediately the paramedics identified complex partial seizures and weakness on her right side, but they did not know the cause. At a local Dallas hospital, doctors discovered a large bleed in the front of the left side of her brain. An emergency surgery stopped the bleeding and showed the reason behind it – an abnormal connection of arteries and veins called an arteriovenous malformation or AVM.
The life or death situation left Ashley and her husband, Scott, in shock and without much time to comprehend the situation.
“Our world was turned upside down that day,” Ashley said. “We had no idea what an AVM was, that babies had strokes and the ups and downs of her recovery.”
Several more seizures after surgery led to an increase in Ella’s medication as the doctors thought the episodes were from the original bleed and trauma from surgery.
But the seizures did not stop there.
Eight months later Ella began staring off into space followed by a jerking motion.
“We knew it wasn’t something she should be doing and feared they were seizures,” Ashley said. “We called the neurologist and had an EEG done.”
Ella’s diagnosis – infantile spasms.
“I still remember the phone call from her neurologist,” Ashley said. “My heart sank as I tried to write down everything he said and our treatment options, but all I could think was, why is this happening to her? Hasn’t she been through enough already? After I hung up with the doctor, Scott and I did a little research on infantile spasms before I had to stop myself because everything I read made me cry and worry more. We realized we needed to stop worrying about the why and focus on how to get these under control.”
After trying multiple medications, a round of steroids and EEGs, nothing seemed to be permanently stopping Ella’s spasms. That’s when Ashley and Scott searched for answers.
“Her neurologist at the time was a good doctor, but we wanted something more to help Ella,” Ashley said.
Epilepsy has had a tremendous effect on the Grimes family. Their routine has revolved around medication schedules and everything stops when Ella has a seizure.
“We have started to venture out more to do things with the girls and just bring Ella’s medication with us,” Ashley said. “We don’t want our girls to miss out on life because of epilepsy. Epilepsy has robbed Ella of living her life to the fullest and interrupts her several times a day, while she walks, eats, plays, sings, learns at school, participates in therapy, takes a bath and sleeps just to name a few. But she has shown grace throughout all of this and is a trooper with every new medication and hospital stay.”
Ella’s sisters, 5-year-old Chloe and 2-year-old Sofie, have always known that Ella got a “boo boo” on her head and that she takes medicine for it. In fact, the girls’ relationship is so close that they both help Ella take her medicine by singing to her and dancing to make her laugh.
One of the hardest parts of dealing with Ella’s illness has been awareness.
“It is very difficult to get others to understand what Ella is going through,” Ashley said. “Her seizures don’t look like the ones you see in the movies – sometimes she talks in between them and continues on with what she was doing after the clusters have finished. Outsiders don’t realize how much the seizures affect her even though they look minor. We can never let our guard down because the seizures come without warning and happen several times a day. As a parent, it is hard to not have all the answers and make everything better for her.”
Ashley and Scott met with Ella’s pediatrician who advised them to get her into the Children’s neurology program because of their experience, resources and cutting edge treatments.
“We collectively felt the Comprehensive Epilepsy Center at Children’s was the best place for Ella to fight the seizures,” Ashley said.
Dr. Susan Arnold, medical director of the Pediatric Epilepsy Center, would be Ella’s doctor at Children’s. After Ella’s first appointment, Ashley knew they had made the right decision.
“Dr. Arnold really took the time to go over all of Ella’s medical history, reviewed her MRIs with us and answered all of our questions,” Ashley said. “She gave us several options for trying to get the seizures under control: try a new medication, start the ketogenic diet, or we could have Ella evaluated for a surgery called a functional hemispherectomy.”
The diet would not be an option as Ella does not drink enough and after six failed medications, the chances of it working were slim. Further testing revealed that Ella would be a good candidate for the hemispherectomy to remove the affected part of her brain. The tests indicated that her seizures were originating on the left hemisphere where Ella’s original AVM rupture occurred, and she already had a portion of the left frontal lobe of her brain removed. This location of the brain affects speech, and Ella is able to talk, so the doctors felt that her speech might have transferred to the right hemisphere. Those factors matched with Ella’s young age meant the chances would be higher for the right side of the brain to take over functions typically performed by the left side.
At first, Ashley and Scott did not feel ready to consider the surgery, but after many failed medications, they decided it was time.
“When we found medications that worked to control her seizures, it was like Ella blossomed. She would make developmental jumps. Unfortunately, the medications didn’t work for long periods of time and the seizures returned. We had to look past our fears and realize that this was Ella’s best option to control the epilepsy and be able to live her life to the fullest,” Ashley said.”
On July 24 of this year, the Grimes family braced themselves for a life-changing day. Ella would undergo a four-hour procedure performed by neurosurgeon Dr. Angela Price that would hopefully reduce or eliminate her seizures.
“We were at peace on the day of surgery,” Ashley said. “But at the same time we were nervous and scared because we understood the risks and that there are no absolute guarantees. She is only 4 years old and was going into her second brain surgery. I remember Scott and I holding her tight, giving her lots of hugs and kisses and not wanting to let her go. When the anesthesiologist carried her back to the operating room, the emotions from her first surgery came back and we relied on our faith and our confidence in Dr. Price and her team to take care of our baby. We were fortunate to have the support of family and friends that did a great job taking our minds off of Ella’s surgery even if it was just for a little while.”
Ashley and Scott waited with friends and family as neurosurgeon Dr. Angela Price carefully removed parts of 4-year-old Ella’s brain with the hopes to eliminate the seizures.
Four hours later, Dr. Price emerged from the operating room with the words “it went beautifully.”
Ashley and Scott breathed a sigh of relief.
“We did not know how much Ella would lose from the surgery,” Ashley said. “For her to speak was a great thing. Recovery had its ups and downs. She sat up, said no and ate a couple of goldfish the night after surgery. She was fortunate not to have any swelling, seizures or require a shunt. She really wanted to sleep a lot and be held.”
After a week, Ella began acting like her spunky self.
“We were both excited and overjoyed like a kid at Christmas when Ella’s personality started to come back and she was saying her usual funny phrases and singing her songs,” Ashley said. “Her sisters, Chloe and Sofie, noticed differences immediately, too. They smiled and cheered every day we told them she hadn’t had a seizure. Chloe noticed how Ella would answer her questions much quicker and that she wasn’t drooling like before surgery.”
Ella left Children’s two weeks after surgery and spent 10 days at a rehab facility. By day three, she could walk and talk. After another three weeks in the rehab facility’s day therapy program, Ashley could see significant changes.
“She has truly amazed everyone with how quickly she bounced back from surgery and her new zest for life,” Ashley said. “She is now walking so much better, and at home she is free to roam on her own. She uses her right arm as a helper hand when eating and playing. The biggest change we have seen is her language. She is talking a lot more and trying to have conversations with us.”
As of today, Ella has not had a seizure since her surgery three months ago. She thrives in school and her outpatient therapy program. Follow-up appointments with neurologist Dr. Arnold will continue, and she will have an MRI on her one-year surgery anniversary.
“Our hopes and dreams are the same for all three of our daughters,” Ashley said. “We hope they are happy, healthy and live life to their full potential. For Ella specifically, we hope her life will be one without seizures and that she will continue to be as kind, funny and resilient as she has always been. Ella likes to kick the soccer ball around. I would love in the near future to sit on the sidelines on a Saturday morning and watch her playing in a soccer game.”