UTHealth Houston surgeons save 6-year-old from life-threatening brainstem lesion

Witten Shane Daniel of Lubbock, Texas, fell seriously ill with the flu in April. When his eyes started twitching and he felt dizzy, his mother, Casey Daniel, suspected that a prolonged fever might be the cause. But as Witten’s symptoms got worse, Casey realized her son’s condition had become a nightmare that would last for several months and require treatment across the state. 

“At the time, I had no idea how serious the situation was,” Casey said. “It’s hard to imagine now that I could have lost my little boy.” 

A single mom, Casey, took matters into her own hands and rushed Witten, who was 6 years old at the time, to a Lubbock emergency room, where he underwent a series of tests. Initially, the medical team in Lubbock suspected a tumor. However, further tests revealed something more unusual: a cavernoma, a tangled mass of abnormal blood vessels nestled in the middle of Witten’s medulla, the lower part of the brainstem that controls breathing, heartbeat, blood pressure, swallowing, digestion, and reflexes like coughing, sneezing, and vomiting.

“Within half a day, he lost his ability to speak, move, and breathe on his own,” said Casey. “The cavernoma was hemorrhaging; his situation went from bad to worse in a heartbeat.”

After running more tests, doctors told Casey there was essentially nothing they could do for her son other than treat the bleed and manage his symptoms. They said surgery was too risky, and the best course of action was to send Witten home on a ventilator and feeding tube.

“Cavernomas are typically present from birth, but they often remain unnoticed and cause no problems for years. In children, bleeding like Witten experienced is very uncommon,” said Manish N. Shah, MD, professor of pediatric neurosurgery at McGovern Medical School at UTHealth Houston, as well as a John P. and Kathrine G. McGovern Distinguished Chair and the THINK Neurology Chair in Pediatric Tumor Research and Innovation. “The impact really depends on where the cavernoma is located. When one develops in the brainstem, as in Witten’s case, it can be especially concerning and more likely to cause symptoms.”

Casey refused to give up on her son. Late at night in the hospital, she came across an article about operable cavernomas in adults written by Jacques J. Morcos, MD, professor and chair of the Vivian L. Smith Department of Neurosurgery and a John P. and Kathrine G. McGovern Distinguished Chair at McGovern Medical School. 

She decided to send him an email, attaching Witten’s scans to it, along with an impassioned plea for help.

“Within 12 hours, I received a call from Dr. Morcos, telling me that Witten’s cavernoma was indeed operable. He told me to get to Houston as soon as possible because he was certain it would re-bleed, which would cost him his life.”

On June 1, Witten was flown from Lubbock to Houston. Just four days later, Witten went into a four-hour surgery, where Morcos and Shah successfully removed the cavernoma without issue.

“Operating on a brainstem cavernoma requires a high level of skill and experience. The goal for the surgeon is to navigate a mine field to reach the target. It’s also like being a masterful burglar who can slip in and out without a trace,” Morcos said. “One slight move can easily kill the patient.”

The result was nothing short of miraculous. Within hours, Witten woke up from surgery and began speaking immediately. He was breathing on his own, and with the help of the physical therapy team, he was walking just five days later.

Due to his age, Morcos said that Witten’s health care team will need to monitor him closely to ensure the lesion doesn’t return. However, overall, his outlook remains excellent, and he has made significant progress. 

“From the moment we were picked up in Lubbock to the moment we left, every member of the health care team was there for Witten. Every question I had was answered, no matter how small. The sole focus of everyone was Witten’s recovery,” Casey said. “So many highly trained professionals wouldn’t touch my son’s case – I’m so grateful that Drs. Morcos and Shah did.”

Today, Witten just started school as a second grader and has since celebrated his 7th birthday. Due to his ordeal, he missed the end of first grade, but he had already earned enough credits to move forward. His upbeat, quick-witted personality shines through, and his most significant victory came when he returned to playing baseball – the goal he had set for himself while working with the physical therapists after his surgery.

His follow-up appointments are now handled via telehealth from Lubbock, but if his doctors say he needs to come to Houston for anything, Casey said they would be there without hesitation. In the meantime, Witten is back to riding his bike and spending as much time as possible outdoors, playing as much as possible.

Casey shares Witten’s story in the hope that it will help other families facing impossible situations to see that with the proper medical expertise, anything is possible.

"Our experience really underscores the importance of having a centralized database where people can research rare medical conditions and identify the specialists who treat them," Casey said.

While Shah and Morcos performed the surgery, they both concur that Casey is the real hero in the story.

“She wouldn’t give up and explored every possible option to save her son,” Morcos said.  “Without her, Witten would not be alive today.”

For Casey, the experience was both terrifying and transformative. What began as a bout of the flu turned into the fight of her son’s life, one that she refused to lose.

“When I see Witten back to doing the activities he loves, I’m reminded of how close we came to losing him,” she said. “I will always be grateful to the medical team who gave him a second chance.”