This article was originally published on the UTSW/MedBlog, Authored by Dallas Armstrong, M.D. and Angela Price, M.D.
Jordan Moreno has earned the nickname “Miracle Baby” several times in his life. Born at 1 pound, 15 ounces, he spent his first four months in the neonatal intensive care unit (NICU).
His mother, Ana Pizarro, had lost two previous pregnancies, so when her son survived and thrived – growing into a boisterous and bright preschooler – she said it truly felt like he was defying the odds.
But just after Jordan’s fourth birthday, the family faced another frightening health crisis: Seemingly out of the blue, he began to have explosive, rapid-fire seizures.
The episodes began with occasionally wetting his pants – not normal for Jordan. Then one day he threw up in the car. When his dad, Esteban, began cleaning him up, Jordan became unresponsive, as if he were in a trance.
They rushed him to the emergency room, where he suffered another similar episode within 15 minutes of arrival. He was admitted to Children’s Health Dallas and reached a peak of 50 epileptic seizures per day over the next week or so as the hospital team tried medication combinations to stop the episodes.
When it became clear medication wasn’t going to work and Jordan’s seizures intensified, the hospital staff called in UT Southwestern’s Pediatric Epilepsy Team.
The team has decades of neurology expertise and specialization in epileptology to provide treatment options for the most complex pediatric epilepsy cases, like Jordan’s. The Epilepsy Program is one of an elite group of Level 4 centers for children in the U.S., as designated by the National Association of Epilepsy Centers (NAEC). UT Southwestern is also the only pediatric center accredited by The Joint Commission for Distinction in the Management of Pediatric Epilepsy.
The epileptologists conduct high-level investigations, balancing the safety – right now and over the long term – of surgical and nonsurgical treatment options for pediatric patients. Each week, the team presents case findings to a board of neurosurgeons, epileptologists, nurses, and neuropsychologists. Together, the collective brain trust decides the best treatment recommendations for each patient.
In Jordan’s case, the team recommended brain surgery because both the Epilepsy and Neurosurgery teams believed it would give him the best chance for a healthy future.
On March 4, 2020, Jordan had surgery; a year later, he is still seizure-free. This is the story of how he got from there to here.
Enter the Epilepsy Team
Epilepsy can cause seizures that start all over the brain (generalized) or in a specific area (focal). In children, seizures may go away in time or with medication, which most neurologists and many primary care physicians (PCP) are comfortable diagnosing and treating.
For some patients, however, the seizures do not go away or respond to medication. In these complex cases, a neurologist or PCP can reach out to an epileptologist – a neurologist with epilepsy expertise – to conduct an extensive evaluation and help determine whether a patient may benefit from epilepsy surgery.
In the setting of our multidisciplinary team with such expertise, approximately 90 percent of the patients who ultimately undergo neurosurgery experience dramatic seizure reduction or long-term seizure freedom.
Jordan’s case was particularly challenging. Though his initial evaluation suggested generalized epilepsy, Jordan’s symptoms during seizures and subtle findings on further electroencephalography (EEG) studies gave us reason to suspect focal epilepsy and investigate whether he might have a focal cortical dysplasia (FCD) – an abnormal area of brain cells that can generate difficult-to-treat seizures.
The Epilepsy Team conducted presurgical monitoring of Jordan’s seizures:
- On video and imaging
- Through in-person physical exams
- Ictal and interictal SPECT scans – tests that detect blood flow changes in the brain during a seizure as well as when a seizure is not occurring.
- EEG, a test that records electrical activity in the brain.
FCD is a common cause of drug-resistant (intractable) focal epilepsy, meaning even if Jordan took multiple medications, he’d likely still have many seizures a day for life. With seizures so violent and explosive, there was a serious risk of permanent loss of speech, fine motor skills, and impulse control due to long-term, back-to-back episodes.
Without proper treatment, Jordan’s most optimistic future likely would have included behavioral and mood challenges, limited independence, and further brain damage. He needed treatment, fast.
The stereo electroencephalogram (SEEG) would determine whether Jordan was a candidate for a potentially curative surgical procedure. If so, it would be up to his parents to make that difficult choice for their son.
“Hasn’t our boy been through enough?”
At the hospital, the episodes started coming faster, in clusters lasting 30 minutes or more, even in his sleep. Esteban and I kept track of when every seizure came and how long it lasted. During those weeks at the hospital, all we could think was, “Hasn’t our boy been through enough?”
So, despite our relief in getting a diagnosis, the idea that Jordan might need brain surgery took our breath away.
Dr. Armstrong reassured us her expert team had tried every medication and nonsurgical option available, and that surgery could potentially give him a seizure-free future. However, they would need a more invasive test to determine exactly where in Jordan’s brain the seizures were starting and whether it would be safe to remove the affected brain tissue.
She answered all our questions – Dr. Armstrong understood we were apprehensive about more tests, but that we wanted what was best for our boy. Most importantly, she reminded us that we, his parents, were the ultimate authority in our son’s care. We had the right to decide the next steps, and the Epilepsy Team would support our decision.
Esteban and I talked it through. We couldn’t bear to see our little boy suffering from intense seizures or risk long-term brain damage from the seizures. By the end of our conversation, we felt confident in Dr. Armstrong’s recommendation to proceed with presurgical testing.
Enter the Neurosurgery Team
Successful surgery for focal cortical dysplasia relies heavily on where the seizures originate in the brain. Jordan’s seizures were starting in the frontal lobe near an “eloquent cortex,” a part of the brain that directly controls mood and behavior, and is fairly close to speech and motor regions.
The Epilepsy Team recommended a stereo electroencephalogram to precisely locate Jordan’s FCD. Using his EEG results to determine the locations to sample, a robot (named ROSA) helped us surgically insert tiny electrodes – about the size of the gel tube in an ink pen – into Jordan’s brain through a small incision in his skull. By observing the information obtained from these strategically selected areas of his brain, we could record their electrical activity and pinpoint the exact location of FCD-affected tissue.
Combining the results into a “brain map,” our epilepsy board conferred about the boundaries of the proposed surgery: How much affected tissue could safely be removed? How much healthy tissue could stay intact to keep Jordan talking, learning, and emoting?
In Jordan’s case, the seizures were originating close to eloquent areas of his brain – but just far enough away that, with a precise surgical technique, we could safely remove the tissue and potentially eliminate his seizures for life. In cases like Jordan’s, 40 to 95 percent of patients achieve freedom from seizures through surgery. We felt confident that we could safely remove the abnormal brain while leaving the eloquent brain intact.
The board came to a consensus: The next step was to meet with Jordan’s family and discuss the recommended surgical plan. This is always the most challenging part for me – guiding families as they grapple with fear of the unknown and a desperate desire to alleviate or eliminate their child’s seizures. When it comes to their baby’s brain, parents are understandably concerned about even the slightest chance something could go wrong.
Jordan’s parents and I discussed the risks of surgery, which are rare but may include infection, bleeding, loss of function, no change in seizure frequency, stroke, or death. Ana and Esteban asked a lot of challenging questions, which we always appreciate. The more families know, the better equipped they are to make the best choice for their child.
Together, they decided surgery would give their son the best chance at a healthy future. And they agreed with us that his seizures were so severe that surgery couldn’t wait – we rearranged our operating room schedule to get him into surgery as soon as possible.
“We were scared out of our minds.”
I broke down crying when the surgery team took Jordan back to the operating room. After losing two pregnancies, it was so difficult to be at the hospital again, going through something so overwhelming.
The surgery took about five hours, followed by 90 minutes of recovery. Dr. Price opened Jordan’s skull and, using advanced imaging for guidance as well as microsurgical techniques, removed the brain tissue that was causing his seizures.
The surgery team provided updates throughout the day, which was comforting. After the abnormal tissue was removed, they told us Jordan’s brain activity had calmed down substantially. They were confident the surgery was a success.
Dr. Price had prepared us that Jordan’s speech or mobility might be temporarily affected after surgery. As we waited in the recovery room, worry set in: Will he be able to speak? Will he remember us?
I stepped out because my mother insisted I eat something, but I didn’t get far. My brother popped out with the best news – “Ana, he’s waking up! He’s asking for Mommy!” I rushed back in and choked up when I saw Jordan talking with Esteban, naming the colors of the toy cars by his bed. My baby was going to be OK!
Jordan did some physical and occupational therapy the day after surgery. Because his seizures were in the frontal lobe, we expected some temporary motor difficulties, such as arm trembling or trouble putting on his shoes. Much to our joy, none of that happened.
Not only were his mobility and speech fine, he wanted to leap out of bed and color, watch cartoons on his iPad, and play with his cars. We stayed in the hospital just three days postsurgery.
We were so fortunate. Jordan’s surgery was done two weeks before hospitals around the U.S. began pausing some nonemergency procedures due to the COVID-19 pandemic. If his first seizure had happened a few weeks later, we might have had to wait months for a cure.
Jordan had a large scar, from his forehead to the back of his skull. Otherwise, he looked normal. He moved a little slower and we had to be a little more cautious with bathing and play time – his surgical incision would heal over a few weeks and continue to improve over the next year. The epilepsy team sent him home with a special helmet, but it didn’t slow him down.
Within days, he was running, jumping, and playing.
He also went home with one medication to prevent any seizures in the rare chance a tiny bit of the damaged tissue remained. He stayed on the medication from March through December 2020 and has had no seizures. After stopping the medication, he’s been seizure-free, too. It feels like another miracle.
Today, Jordan lives life just like any other 5-year-old boy – bumps, bashes, and all. I still worry sometimes and probably always will. But we feel blessed to have a team of epilepsy experts and health care professionals taking care of our baby.
Team-based care, amazing outcomes.
Finding an effective epilepsy treatment does sometimes feel like a miracle. Thirty years ago, a surgery like Jordan’s was a pipe dream. It was considered too risky. With advances in imaging, surgical techniques, and discoveries about the nuances of complex epilepsy, we can give children and their families compelling options and, in many cases, we give them hope.
Ana and Esteban followed their intuition and acted quickly when they noticed something wasn’t right with Jordan. We are grateful they gave us the opportunity to unravel the mystery of his condition and provide his family with a path to a healthier future.
To find out whether your child might benefit from advanced epilepsy care at UT Southwestern, call 469-914-9238 or request an appointment online.