Believing Together

By Teri R. Williams Photos By Hannah Dean

As Brynlee Butler's parents navigate an unforeseen Sturge Weber diagnoses, they discover that love is more powerful than fear.

Hannah Dean planned to become a schoolteacher. After graduating from Vidalia Comprehensive High School in 2022, she started classes at East Georgia College in Swainsboro. Then, in the last semester of her first year, Hannah found out she was pregnant. Even though the pregnancy was unplanned, the new life growing inside her filled her with joy. It was a joy that was beyond comprehension, the joy of a mother’s love.

Brynlee was born on September 21, 2023. Hannah and Brynlee’s father, Ty Butler, were overjoyed. The young parents did not understand the pediatrician’s concerns about the purplish-colored birthmark, known as a port wine stain, on the left of Brynlee’s face. However, the results of an MRI showed enlarged blood vessels on the left side of Brynlee’s brain, which confirmed a diagnosis of SturgeWeber syndrome.

According to rarediseases.org, “One estimate places the incidence at 1 in 20,000-50,000 live births.” Even though facial birthmarks and neurological abnormalities are the most common characteristics of the disease, “Each case of SturgeWeber Syndrome is unique and exhibits the characterizing findings to varying degrees” (sturge-weber.org). It was a lot for Hannah and Ty to process. Even so, they were confident that their love for their daughter and faith in God would lead them through the days ahead.

Because seizures and glaucoma are common complications with Sturge-Weber, Brynlee was scheduled for doctor appointments at two weeks old with three different specialists at the Children’s Hospital of Atlanta (CHOA). Thankfully, no signs of glaucoma were detected by the ophthalmologist. The

vascular doctor advised Hannah on laser treatments for the birthmark.

“He said Brynlee could begin laser treatments for the birthmark at six months as long as she remained seizure-free,” said Hannah. Thirdly, the neurologist took scans of Brynlee’s brain to detect any changes in the future.

“We were advised on all the signs to watch for. Her doctors encouraged Hannah to take Brynlee home and treat her as any normal child,” said Hannah. And that’s what they did—at least, until December 26, 2023.

“Ty and I had taken three-monthold Brynlee to Dublin to have lunch with his dad on his birthday,” said Hannah. “But Brynlee wasn’t feeling well. We took her to the emergency room, and they told us she had the flu.” Brynlee was started on Tamiflu and told simply to watch her closely.

While Ty went in Walmart for formula, Hannah waited in the car with Brynlee. “I noticed that her fist was clenched, and it seemed strange. When Ty got back with the formula, she just started projectile vomiting. Then she went completely limp. We thought we had lost her,” said Hannah.

Brynlee was rushed back to the hospital. When they arrived, Hannah said, “Her gaze had become fixed. I asked the nurse if this might be a seizure, explaining that she was at risk for seizures.” The nurse was adamant that Brynlee’s symptoms were not indicative of a seizure just before her small body began twitching and jerking uncontrollably. That night, Brynlee seized for four hours straight.

“They couldn’t get an IV in for emergency medications,” said Hannah, “so they had to drill into the bone marrow and do an IO.” According to MedicineNet.com, “Intraosseous (IO) cannulation or IO access is a rapid method to administer medications through the bone marrow cavity in a critically ill or injured patient.” “They had to do it twice because they didn’t get it in right the first time,” said Hannah. “But they had to get it in, or we would lose her.”

Brynlee was stabilized and immediately transported to a hospital in Augusta. “We were in the hospital there for a month before they could settle her seizures with what they refer to as a ‘cocktail of medicines.’”

After she was released, Brynlee was sent home with four different medications and a strict routine for their disbursement. “I used to put the medicine in her bottle, but it caused her not to want to drink her bottles anymore because she always thought every bottle had the medicine in it,” said Hannah. Over time, Brynlee adjusted to the routine.

Through every moment, Hannah had the support of her parents, Jennifer and Shane Dean, as well as Brynlee’s father, Ty, and his parents, Melody and Craig Butler. “Each time Brynlee has been in the hospital, Ty has been there the entire time. He will barely leave the room.”

The seizures seemed to be triggered by illness. We always keep emergency medicines for that sort of thing on hand,” said Hannah. In May, she came down with an ear infection. “Brynlee only had five seizures during that time.” Five was so many less than times before that Hannah could only be grateful.

In June, Brynlee was taken to CHOA for the complicated process of weaning her off of all her medications for an evaluation. Brynlee’s seizures were monitored with an EEG as she was taken off of each one. While there, she also had a PET scan and an MRI. “They needed to make sure that she was eligible if brain surgery became necessary,” said Hannah.

But things didn’t go so well. “She had to be given the emergency medication for seizures. She stopped breathing, and they had to call Code Blue,” said Hannah. Thankfully, Brynlee pulled through. With the testing behind them, the results were then submitted to a team of doctors for consultation.

On September 16, 2024, Hannah and Ty met with a neurosurgeon. The scan taken just after her birth had been compared to scans taken in July. “There is a major amount of shrinkage and damage to Brynlee’s brain,” wrote Hannah in a post to friends on Facebook. As the seizures worsen, Brynlee could potentially become paralyzed on her right side.

According to the surgeon at CHOA, Brynlee’s best option would be a hemispherectomy. “A hemispherectomy is a rare surgery that either removes or disconnects half of the brain for the other half,” according to the Cleveland Clinic website. “As the seizures worsen, Brynlee could easily become paralyzed on her right side,” said Hannah.

There are risks with the surgery but more significant risks without it.

“Never in a million years would I have thought I would be sitting here having to make this decision,” Hannah wrote on Facebook. “My heart is hurting, and my mind is full of all the different possibilities…. God has truly blessed us, and I know to turn to him for guidance and direction always. He will make everything okay. May our decision be from the knowledge and strength that God gives us.”

Prayer cultivates a sense of dependence on God, aligns our will with His, and provides strength and comfort. The 17th-century French Mystic Madame Guyon spent eight years in prison for the simple truths she published in a book called The Short and Easy Method of Silent Prayer (1685). “Prayer,” she wrote, “is the application of the heart to God and the internal exercise of love.” As a community, this is an opportunity to pray for Brynlee and her family. For those who are followers of Jesus, prayer may very well be our most important purpose and calling.

Brynlee’s surgery is tentatively scheduled for early January (2025). Hannah and Ty will stay six to eight weeks in Atlanta for their daughter’s surgery at CHOA and the rehab to follow. Monies raised through a corn hole tournament sponsored by the Shriners of Lyons will allow Brynlee’s parents to be with her. “We are so grateful for everyone who gave,” said Hannah.

At times, fear can be easier to allow in our hearts than hope. But love is always more powerful than fear. Even when hope struggles to endure, love never fails. From the moment a child is born, a parent is transformed by a love beyond words. For all the unknowns, Hannah and Ty’s love will be there to guide and strengthen them. And through Brynlee’s surgery and time of recovery, may we as a community be a continual source of encouragement through love and prayers for this amazing little girl.

“Sturge Weber was a name I had never heard until September 21, 2023. I never knew how much power that name would hold.” –Hannah Dean