Rumson teen with spina bifida uses medical experiences as catalyst


 A brave and determined girl who is living with spina bifida requests to view her own medical procedures and remain conscious when entering the operating room because she plans to become a neurosurgeon.

“I’m going to let God take me wherever he wants,” 17-year-old Victoria Caetano said in an interview on April 6.

Spina bifida is a birth defect that occurs when the spine and spinal cord do not form properly. Spina bifida may cause physical and intellectual disabilities that range from mild to severe, according to the Centers for Disease Control and Prevention.

Victoria, a senior at Rumson-Fair Haven Regional High School, was honored as a brave member of the Brave Minds Project on April 7 during the organization’s launch event at The Shepherd & The Knucklehead in Hoboken.

Brave Minds Project is a nonprofit designed to help create a community for patients ages 10-29 who have been diagnosed with various brain and brain stem conditions.

Victoria, who is from Rumson, has a benign tumor on her lower spine that affects the nerves in her legs and select internal organs. She said the tumor is “strangled” around her nerves and spinal cord. The strangulation of the nerves affects access points of messages that are relayed to the brain and to sensory areas of her body, she said. As a result, Victoria said she cannot feel the back of her right leg.

According to the National Institute of Neurological Disorders and Stroke, there is no cure for spina bifida. The nerve tissue that is damaged cannot be repaired, nor can function be restored to the damaged nerves.

“I was super lucky,” Victoria said. “There are a lot of parents that don’t find (the tumor) until it’s too late. The majority of kids that have spina bifida can’t walk. Some can’t talk or they don’t have control over certain functions of their bodies.

“(This disease) is very complicated. (Doctors) call (spina bifida) the snowflake disease because no people have the same case. You can have the same base case but that case will always affect something different in each person.

“Every time doctors see me and they know I have spina bifida, they say ‘Wow, you can talk to us?’ Or they say ‘Wow, you can walk?’ I was really lucky,” she said.

Victoria, who is scheduled for her third spinal surgery on April 15, said her benign tumor can never be completely removed. She said she could become paralyzed if surgeons accidentally damage her spinal cord in an attempt to remove the embedded tumor.

Rather, surgeons will carefully shave areas of the tumor affecting nerves, she said. 

Victoria, who said she “pretends” to live a normal, teenage lifestyle, said although she can do most of the things the average person can, such as running track and cross-country, she “start(s) my day taking a handful of pills.”

“But I’m a pro,” Victoria said with a laugh. “I’m at doctors offices all the time. I am always at a hospital getting treatment done or talking with pediatricians and neurosurgeons. I always have Band-Aid residue on my arm from (intravenous therapy). Things like that are normal. For the most part, I try to play it like I’m 100% normal.”

Aside from routine check-ups and casual conversations with surgeons, Victoria is the leader of her high school Fellowship of Christian Athletes club, involved in several other clubs, babysits and works part-time at Woody’s Ocean Grille in Sea Bright.

Despite her quest for normalcy, Victoria has dreams and aspirations – goals of which are “normal” for adolescents graduating high school and entering university.

Victoria said she wants to become a neurosurgeon.

“I don’t see myself doing anything else. I grew up in hospitals. I grew up at doctors appointments. Being around nurses and doctors, I would explore everything. I asked to be rolled into surgeries without the medication that makes you drowsy. I wanted to see everything and look at all the equipment.

“(Spina bifida) inspired me and showed me that there are people out there that don’t even know me, and they have dedicated their lives to helping me,” Victoria said, reflecting on the medical professionals who have cared for her since birth.

“If I could take my experience and be able to use it to help others, I can’t imagine how much I could influence or help them. The first time I met someone with spina bifida was four months ago,” she said.

Victoria said Alyssa Carfi, founder of Brave Minds Project, recently contacted her. Carfi and Victoria have the same neurosurgeon at Hackensack University Medical Center

“I never had a group to be a part of before,” Victoria said. “For me, the people I could relate to were the doctors and nurses. I wish to be able to help children the way my doctors helped me. One day, I want to be standing in that operating room, scrubbed in, with a scalpel in one hand, a tool in another, and fix people.” 

In a subsequent interview with Carfi, the 28-year-old from Hawthorne said, “I am so glad we (honored) Victoria. She is young like I was when I had my brain stem surgery. One of the first things she said to me was ‘I have always dreamed about using what has happened to me to help others.’

“Instead of using her medical experiences against her, (Victoria) is using them to fuel something good,” Carfi said.