Why These Parents Made the Agonizing Decision to Have Half Their Child’s Brain Removed (Exclusive)

When Ann and Seth Leeb Mora’s daughter was just four months old in January 2008, she started experiencing seizures. Barely noticeable at first, they soon numbered hundreds a day. They learned that Mora suffered a stroke in utero, which destroyed most of the left hemisphere of her brain and caused catastrophic epilepsy.

Medicines didn’t help, and the South Orange, N.J., couple faced what seemed like a terrifying decision: Maura’s best chance to stop the seizures, the doctor told them, was a hemispherectomy — the removal of the damaged part of her brain. “We were amazed,” says Ann Leeb. “Shocked.”

Teenage girl had half her brain removed as a baby — now lives a ‘glass half-full life’ (Exclusive)

It’s a reaction Monika Jones knows well. As the founder and CEO of the Pediatric Epilepsy Surgery Alliance, she has spoken to many families in the same situation. “We hear parents say, ‘I can’t do this to my child,'” she says. “The journey to epilepsy surgery is very scary.”

Part of the Alliance’s mission is to help parents navigate that path — and understand how vital surgery can be. “We want to start a conversation. Epilepsy surgery is not a last resort. It can save lives.”

Ann and Seth Leeb got over the initial shock when they realized the consequences of not continuing the operation. “The doctor explained that Maura’s brain had started to throb,” says Ann. And the doctor told them that the seizures might start affecting the healthy side of her brain—in essence, the “good side” might learn to have seizures too.

Mora Leeb in March 2008 at the age of six months with brain monitoring equipment.

Courtesy of the Leeb family

About two-thirds of epilepsy patients will respond to medication. For the one-third with drug-resistant epilepsy, if the seizure activity is linked to one area of ​​the brain, as was the case with Mora, surgery may be the best option. “When a baby has seizures that frequent, the brain isn’t doing any of its normal functions,” says Dr. Prakash Kotagal, a pediatric epileptologist at the Cleveland Clinic who treated Mora. “Their development is not only stagnating, but actually regressing. Our goal is to stop seizures as soon as possible. If the drugs work, that’s wonderful. If not, then we look at other options such as surgery.”

Time, however, is of the essence in cases like Mora’s. “If you prevent surgery on the damaged hemisphere, you allow the good hemisphere to start developing, and patients can be in the best possible cognitive state,” says Dr. William Bingaman, neurosurgeon and chief of epilepsy surgery at the Cleveland Clinic, who performed Mora’s surgery in 2008 and who perform up to 40 hemispherectomies every year. (About 150 are performed in the US annually.)

Jones knows how dangerous infantile spasms like Mora’s can be — her own son experienced seizures as an infant. “They are a very dangerous type of seizure that can have extremely damaging effects,” says Jones, whose son underwent a hemispherectomy. “If you have an infant who has infantile colic, you really need to go to surgery as soon as you know it’s drug-resistant. It is important to know what a lifetime of drug-resistant seizures will do to a child. They could stop talking. They could stop walking. They may have organ damage or organ failure. They could die.”

The earlier in life a patient undergoes a hemispherectomy, the better. “The younger they are when they undergo surgery, the better the chances of a good recovery,” says Dr. Kotagal, who says the surgery can be performed at any stage of life, but most are done on infants or young children. “The opposite hemisphere can take over many functions [normally performed by the other hemisphere]. This is what we call neural plasticity.”

Jones adds, “There’s a huge potential for a healthy part of the brain to reorganize itself.”

Seth and Ann Leeb were sure that despite their fears, surgery was their answer. “My husband and I were a team in this,” says Ann. “This was our child and this is what had to be done. Seth and I were convinced that the sooner we did this, the sooner Mora would have the most normal development possible for Mora.”

Mora Leeb plays checkers with her occupational therapist Alexandra Clayton at Intensive Therapeutics in New Jersey in October 2023.

Elinor Carucci

It’s not known what that development would look like, but outcomes after hemispherectomies are often surprisingly good, according to Dr. Bingaman, who says the vast majority of patients are seizure-free after the procedure.

A woman who had half her brain removed defies the odds to earn a master’s degree

“One of the questions people ask is, ‘If you take out a hemisphere, what happens to people?’ Most of the time, nothing happens from a functional standpoint because they already had a damaged hemisphere,” he says. “Almost all people after a hemispherectomy, even adults, almost all walk. They usually walk with a slightly different gait, a bit of a limp.” Their peripheral vision can be affected, along with cognition, attention and memory, “but if you stop the seizures, their personality develops and can be normal. We had children who graduated from college, got married and started families. And it’s amazing how it works. We can’t explain everything.”

Mora, now 16, had a hemispherectomy in June 2008, when she was nine months old. dr. Bingaman and his team performed what is known as a “functional” hemispherectomy, separating her damaged left hemisphere from her right and removing tissue from the left side.

Mora Leeb is playing tennis in October 2023.

Elinor Carucci

After the surgery, “it was like a reboot,” Ann says. Mora was like a newborn again. Eventually, she was able to reach her milestones—smiling, rolling over—for the second time, and that progress meant hope. “Mora is reborn for all possibilities,” says Ann. She learned to sit at 18 months, walk at 23 months and spoke full sentences at 6 and a half years.

In 2018, Mora began experiencing seizures again and her team at the Cleveland Clinic recommended a second surgery—this time an anatomic hemispherectomy, the complete removal of the remaining tissue in the left hemisphere in hopes of stopping the seizures. But she continued to learn and grow – she is now in ninth grade and reading. He knows how to play tennis and is learning algebra.

Camila Coelho says being a mom is ‘surreal’ because her epilepsy made her ‘doubt’ about starting a family

Jones points out that every epilepsy surgery “doesn’t mean removing half the brain.” There’s a whole range of options.” And the outcomes for patients are wide-ranging, too. In addition to supporting families like Leebs’ with practical guidance and emotional support, her organization is compiling an epilepsy surgery registry so that other parents, as well as researchers, can better understand what to expect after surgery.

In Dr. Bingaman’s experience, “those kids are happy, smiling kids—and I think Mora just remembers that.”

Mora Leeb photographed for PEOPLE, October 2023.

Elinor Carucci

Categories: Trends
Source: HIS Education