For most of her 20 years, Shanley Stuteville has been a patient at Cook Children’s.

She came to the medical center at the age of 3 after she began having seizures. Even as an adult, she continues to be seen by the Neurosciences team. After receiving care for so long, Shanley knows better than most how overwhelming a hospital stay can be, especially for younger kids.

“I was in the hospital last summer for my second phase [of testing], and my nurses were mentioning they were really glad I was older because a lot of the younger kids get scared,” Shanley said. “After that, my mom suggested I should write a book to help them.”

After years of testing and needles, Shanley has a wealth of empathy for younger patients. She recalls her initial feelings of fear of the unknown, but they were quickly lost when she realized her hospital was unlike any other.

Shanley began to write in July 2018, while scheduled to undergo testing at Cook Children's Neurology Epilepsy Monitoring Unit (EMU), where she would be watched 24/7 for four days to see what the source of her seizures was. The book became a family interest when her aunt began to illustrate Shanley’s medical team and created an animated world where leads, IVs and MRI machines weren’t so scary after all.

“Soon an IV was applied to my hand. Their magical spray made it something I could stand,” Shanley wrote. “It took away the pain and for that I was glad. It did not hurt, not even a tad.”

Shanley donated 50 copies of her children’s book to the Epilepsy Unit, but despite her appointments and hospital stays she’s found other ways to give back to her medical team. As a student leader at her university, Shanley completes a lot of service hours, but her service project last year was a hospital-sized treat.

As a “thank you” to her medical team, Shanley baked over 900 cookies for the Dodson Specialty Clinic staff. It took her a period of several school semesters to complete, but she delivered homemade cookies to each floor.

Although she spends an ample amount of time at Cook Children’s trying to figure out why she has seizures, it’s not uncommon for patients with epilepsy to have periods of time without seizures. Shanley would occasionally go 100 days without seizures, and even celebrated with a cake with her nearly lifelong doctor, Howard Kelfer, M.D., a Cook Children’s neurologist. However a life without seizures was never permanent.

“She’d go long periods of time without having a seizure and then one would come back around so it was really discouraging for them because they thought she was going to be over it,” Dr. Kelfer said. “It eventually became very clear that her seizures weren’t responding just to medications. It was always, ‘well she went this long without a seizure, maybe she’ll go longer this next time.”

Shanley was eventually determined as a surgical candidate after her time in the EMU last summer. Her surgery in May 2019 removed a portion of the front lobe in her brain. While she has not had a seizure since, it will take a year of no seizure activity before it can be deemed a success.

Shanley is now able to sleep through the night, a small comfort she didn’t have before her surgery. Her surgeons were also careful in the placement of her scar, which will be hidden by her hair when it begins to grow back.

“I have to say that I wouldn’t mind if it did [show],” Shanley said. “It will always be a reminder of the wonderful men and women at Cook, as well as hopefully provide an example to other children that they can walk through this and recover too.”

Shanley remains an advocate for younger patients, and is recovering quickly after her brain surgery. Her passion for patients inside the medical center has shaped her life for the last 17 years, and she is hopeful to make it a lifelong expression of gratitude.

“Shanley and her family come to all the family support groups and they’re willing to volunteer to talk to other families,” Dr. Kelfer said. “Shanley is extremely motivated to not allow her seizures define who she is.”

Following her surgery last month, Shanley will return to school this fall where she is studying to become a pediatric occupational therapist.

Welcome to the First in a Series

More than 3.4 million people in the US live with active epilepsy and over 150,000 new cases are diagnosed each year. It sounds astonishing, but 1 in 26 people will develop epilepsy in their lifetime and over one-third of those patients will fail to respond to treatment with medication. The evaluation and treatment of epilepsy is an art form.

This is the story of one of Cook Children’s young patients and the art of treating epilepsy.

To view the entire series click below:

Part 2

Part 3 

Part 4

During the last month of Stephanie Balderamos’ pregnancy, a routine prenatal screening found cause for alarm.

The tests showed some abnormality with her baby’s heart. Doctors agreed Stephanie’s baby would need more testing once he was born.

Following his birth, a cardiac ultrasound confirmed a tumor on the heart of Aaden.

“I still thought were going to go home and I thought I would have a healthy little boy,” Stephanie said. “The doctor came in and told me they had found tumors in his heart. I didn’t think anything at the time. I couldn’t think. I just broke down crying. Then I wanted to know, ‘Is Aaden going to live?’ That’s the first thing I asked. I wanted to make sure he was going to live and get through it.”

Stephanie soon learned that Aaden will live, but he might have many problems moving forward.

Cook Children’s Teddy Bear Transport delivered Aaden from his birth hospital to the medical center where he was placed in the Neonatal Intensive Care Unit.

On the third day at Cook Children’s, Aaden was diagnosed with tuberous sclerosis complex. Tuberous sclerosis complex (TSC) is a genetic disorder that causes benign, or nonmalignant, tumors to form in many different organs in the body. The brain, heart, kidneys, skin, lungs and eyes are some of the more critical locations that these tumors appear. When tumors form in the brain they can cause seizures, developmental delays, intellectual and mental disorders. TSC is also considered a leading cause of medically-intractable epilepsy and autism.

“I didn’t look up his diagnosis until I got home. I didn’t sleep, I didn’t eat or anything,” Stephanie said. “We were there for four days and everything was such a blur at that point. I just remember crying the whole four days. It was pretty tough.”

Before she went home, she remembers sitting in her NICU room alone with her baby before everything changed for her.

“All the sudden several doctors came into the room,” Stephanie said. “There was a neurologist, a cardiologist, a kidney doctor and a lot more. I remember being there and this whole team comes in and spoke with me. They told me about Aaden’s diagnosis. It was very scary at first. I was there by myself and then the whole room is filled with doctors.

“But it was at that point I understood, ‘Wait a minute. I have a team of doctors here and Aaden is going to have a whole team of doctors treating him, probably for the rest of his life. This is a good thing. He has a team on his side and they are all working for him.”

With a plan in place and many more visits to Cook Children’s planned, Stephanie went home still in a bit of a daze. She had once thought these were the problems of other people. They were the kind of things you see in movies or social media, but not to you.

“Once it happens to you, this is your normal now. I have to get used to it. I have no choice,” Stephanie said. “I remember thinking, ‘How am I ever going to go home? Am I ready to take care of him on my own? Am I just going to be waiting for a seizure?’ At that point, I’d never seen a seizure before. I’d never had to deal with it. My main concern was knowing what to do. That’s when I decided I had to look this up and see what I have to do in case Aaden has a seizure.”

Stephanie began her research like any of us would – online.

She read about tuberous sclerosis complex, she looked up seizures on YouTube and she found a mom’s support group on Facebook. Through the Facebook site, Stephanie met five other moms in the area and learned that many kids survive and live long, fruitful lives with tuberous sclerosis complex.

All of Stephanie’s research prepared her for when Aaden had his first seizure when he was 4 months old. Stephanie grabbed her phone to record Aaden’s seizure. She sent the video to Scott Perry, M.D., an epileptologist and medical director of Neurology at Cook Children’s.

The video caught Aaden’s infantile spasms, which lasted about a month and were controlled with medicine (Sabril).

But a new battle began in February of 2017 when Aaden developed focal onset seizures that continue to this day.

Dr. Perry has been a constant in Aaden’s life since he was just a few days old and he continues to be one of the little boy’s primary physicians as he turns 3 in December, 2018.

“My trust in Dr. Perry has grown over time because you know when you have the right doctor taking care of your child. I feel that about Dr. Perry,” Stephanie said. “I trust him 100 percent. Every choice I’m going to make about Aaden, I call Dr. Perry first. If he says yes to something, I do it. If he says no, I don’t. It’s just about trust.”

That faith is returned in Dr. Perry’s opinion of Stephanie. In a consult with other doctors, Dr. Perry marveled at Stephanie’s ability to notice her son’s seizures. Sometimes the seizures are almost impossible to detect, even to a trained eye. But Stephanie knows when they occur. She said she can tell by the look on Aaden’s face. It’ as if “he looking at me like, ‘Hey mom something is wrong.’”

Dr. Perry says he always listens to Stephanie because she has immersed herself in the care of her child and she’s around her child more than anyone else.

To say the birth of Aaden has been life-changing for Stephanie and other members of her family is an understatement. Their schedules run around Aaden’s schedule. Sometimes they have to change their plans if Aaden has had a seizure. Other times they have to make arrangements on who will be taking him to the doctor that day.

With so much of her life now focused on Aaden, Stephanie said she’s not the same person she was before he was born.

“Having our lives change so drastically also made me grow spiritually,” Stephanie said. “I had to lean on God for that deep inner strength to move forward. Our faith is a big part of our lives. Knowing we have God on our side to comfort us during hard times gives me peace. We have so many people who care about Aaden and are always praying for him.”

Stephanie knows that Aaden’s epilepsy has also impacted the life of her older son Eli, who is 8. Because of Aaden’s illness, the family isn’t able to go out to as many events or places as other families if Aaden isn’t feeling well. But Stephanie said Eli is always very understanding of this as well as his younger brother’s schedule and doctor appointments.

“I know being a sibling to a child with special needs is hard because of his experiences, but this has also made him very protective of his brother,” Stephanie said. “They adore each other and have a very special bond. Watching how much Eli does for Aaden melts my heart.”

With their life turned upside down, Stephanie wishes for a sense of normalcy in her home.

Eli and Stephanie have watched Aaden have seizures where he doesn’t speak, while other times he babbles incoherently. They’ve seen his lips and eyelids turn blue. They’ve seen him shaking and convulsing.

They’ve watched seizures as short as 10 seconds, while others last minutes. One seizure lasted more than an hour and half. Lately, Aaden’s eyes twitch now and sometimes he holds his eyes and head because they hurt so bad.

“When we first found out about Aaden’s illness we were in disbelief,” Stephanie said. “What made it even harder was the fact that we did not know what the future would hold for Aaden, and that is still true to this day. I wake up every day not knowing what the day will hold. Some days he might have one or two seizures, others he will have six to eight. Some days the seizures are mild, other days they are more severe and I have to use his rescue meds.

“I have held my son in my arms and watched him quickly deteriorate as he gasped for air and suddenly stopped breathing. These kind of things change a person. I am not the same person I was before Aaden was born. I remember asking myself when would things get back to normal, and then one day I realized this was our ‘new’ normal. Our days now consist of meds twice a day, therapy three times a week and a calendar full of doctor’s appointments.”

Aaden has had to be rushed to Cook Children’s by ambulance after he stopped breathing. All in all, it’s been scary and things seem to be getting worse.

But there is hope. 

Next Week: The Art of The Deal - Following the medial team through presurgical evaluation and the clinic vist to discuss potential surgical options.