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Starting Over After Two Traumatic Brain Injuries: Genevieve’s Story

Genevieve experienced two severe traumatic brain injuries years apart. She shares how she persevered even when it meant relearning how to walk and speak.

 

An estimated 1.7 million people experience a traumatic brain injury (TBI) every year. From athletes to survivors of domestic violence, people who experience repeated TBIs often develop serious complications that disrupt their memory, speech, and thinking. For Genevieve Bahrenburg, two TBIs many years apart left her with aphasia and severe skull damage, requiring a total of 13 brain and skull surgeries over the years. Her most recent TBI set her on a recovery journey that required her to relearn many basic skills.  

Read Genevieve’s full story below, and learn how research into TBI and other debilitating brain diseases and disorders offers hope of recovery for many others like her in the future.

Experiencing a TBI at Eight Years Old

When Genevieve was eight years old, a classmate ran into her during a game of tag, and she fell and hit her head on a large metal sprinkler. She was whisked away to Mt. Sinai, where doctors suspected a concussion and sent her home with her mother.

Over the next few days, Genevieve was sleepier than usual. Her mother thought her behavior was unusual and took her back to the hospital for answers. Even though the medical team thought Genevieve was fine, her mother urged them to conduct a CAT scan. The scan revealed that Genevieve had a very large epidural hematoma—blood pooling between the skull and brain—and doctors said that without an immediate operation, she had very few hours to live.

Genevieve’s mother’s insistence and prompt medical intervention saved her life. Today, Genevieve describes her surgery scar as a “permanent reminder” to live life to the fullest.

Multiple TBIs: “Like Being Struck by Lightning Twice”

Many years later, in 2013, Genevieve was returning to her apartment in Greenwich Village with some friends. The building elevator wasn’t working so they were heading to the basement to find a way up when she was hit on the head and pushed down a flight of stairs.

“My friend heard a loud thud and turned back around to find me lying at the bottom of the stairwell, unresponsive and without a pulse,” says Genevieve. “My skin had turned blue.”

Genevieve had suffered another severe TBI, one that left her in a coma for 22 days. She remembers lying in the hospital bed, unable to speak or control her body. “When I woke up, I was petrified,” she says. “I wasn’t able to understand the doctors completely due to how damaged my brain was. I had to bring it back from ground zero.”

Before Genevieve woke up, neurosurgeons had removed two large hematomas on the right side of her brain. During this time, she was intubated and required five brain surgeries, and doctors had to remove the left part of her skull to ease the pressure on her swelling brain. 

Genevieve describes the two injuries as lightning striking twice. “In fact, it was my childhood TBI scar that provided an access point for my neurosurgeons,” she says.

Starting Over: Learning How to Live Again

After her injury, Genevieve had to relearn how to walk, speak, and breathe on her own. At first it was difficult to even form a full sentence, but three months of speech therapy at an acute rehabilitation facility and hours of practicing by herself gradually restored her basic language skills. Today Genevieve still struggles with aphasia and is often unable to recall familiar words. She is currently medicated for seizures and has been able to keep post-TBI depression at bay with exercise and positive determination. 

“The first word I spoke was ‘mom,’” Genevieve recalls. “That shows you how dear she is to me.

I don’t think I would have gotten through it without her. No matter how severe the surgeries were, she was always ready to go, making sure I was going to come out OK.”

Genevieve was also supported and inspired by her friends, including artist Chuck Close and illusionist David Blaine. Following the accident, Blaine gave Genevieve a Smythson notebook that she would bring to museums and libraries to write down the names of artists and authors that she loved. For Genevieve, these visits to The Metropolitan Museum of Art and The New York Public Library were essential to restoring her language recall and sense of self. Little by little, the art lover, author of Claiborne Swanson Frank’s American Beauty and Young Hollywood, and Vogue and Elle editor taught herself how to read again by challenging herself to remember the names and works of her favorite artists.

To regain her physical strength, Genevieve underwent months of physical therapy to relearn how to walk and work on her balance. She would also walk around the hospital, leaning on her nurses just like she had when she was recovering from her childhood TBI.  

Innovative PEEK Skull Prosthetics

After her recovery, surgeons tried to replace the missing part of Genevieve’s skull with a titanium insert. This is a common procedure for people with severe skull damage, but in Genevieve’s case, her body rejected the material shortly after surgery. Her doctors eventually had to reconstruct her skull using an innovative custom plastic implant called PEEK. 

 PEEK (polyether ether ketone) is a high-performance material used in many prosthetics. Its lightweight nature, durability, and ability to be customized make it an ideal material for constructing prosthetic devices that are both comfortable and functional. PEEK implants and prosthetics have significantly advanced treatment for a range of post-traumatic injuries, including in high-risk procedures like skull implants and reconstruction.

Even with innovations like PEEK and other wearable technologies, treatments for brain injuries are extremely limited and often fail to restore a person’s full physical or cognitive function. Doctors have had to replace Genevieve’s PEEK implant twice, requiring difficult and painful surgeries each time.

Importance of Education and Research

Genevieve’s story is remarkable but not uncommon. Brain diseases, disorders, and injuries like TBI affect more than a billion people worldwide, each of whom has a story to tell. It’s only through research that we will develop better treatments and therapies for someone like Genevieve and help rewrite those stories in the future.  

Genevieve hopes that future research will be able to focus on identifying trends in post-TBI aphasia that may aid in recovery. For example, identifying language patterns or specific words that are difficult to relearn—Genevieve struggled with words that began with the letter “c”—may help doctors develop more targeted therapies for people with aphasia. Genevieve’s determination played a big role in her recovery, and she used art and exercise to boost the brain’s natural healing process as it recharted important connections to relearn the language skills she had lost (an incredible capability of the brain called neuroplasticity). She is also passionate about improving prosthetics for people who have experienced severe TBI and skull damage.

Beyond highlighting the importance of research, Genevieve shares her story with others to explain the impact of brain disease and shine a light on the recovery process. “It’s not like breaking a leg, where you can look at the scans and know what’s injured,” she says “That is not the case with a brain injury, because there are so many different parts to the brain—it’s extraordinarily sensitive.”

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