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Joshua: Spina Bifida

Joshua Toro, an 18-year-old high school student, enjoys spending time with his friends, but he would often avoid social activities until a recent surgery with Dr. Adam Hittelman of Yale Urology gave him the freedom to say yes.

Joshua was born with spina bifida, which occurs when the bones of the spine do not form properly around the spinal column. Although there are varying degrees of spina bifida and the symptoms associated with it, severe forms of spina bifida can cause paralysis of the legs and issues of bladder including bowel control. Joshua, who has both paralysis as well as neurologic impairment of his bladder and bowel, wanted to enjoy his life to the fullest. 

“I’ve spent my whole life in a wheelchair,” said Joshua. “But what stopped me from spending more time with friends was the fear that I would lose control of my bowels while I was out having fun. I was too embarrassed to go hang with my friends fearing that it might happen, so I kept more to myself.”

A surgery known as Malone Antegrade Continence Enema (MACE procedure) could help Joshua control when he would go to the bathroom, so that he wouldn’t have to worry anymore. 

“Dr. Hittelman told me many times about the surgery, but I was afraid of another surgery. I had to have so many surgeries when I was younger, that I just didn’t want to go through one more.”

Joshua first met Dr. Hittelman several years ago in the Yale Urology Spina Bifida Clinic. 

“Joshua is a very nice, outgoing young man, who always maintained his outward appearances," noted Dr. Hittelman. "However, he was very self-conscious about his bowel control, which prevented him from going out with friends or other social activities.” 

At that time, Dr. Hittelman had discussed different management strategies for Joshua’s bladder and bowel.

In 2013, Joshua decided to have the MACE procedure performed. 

“Dr. Hittelman is a great doctor. He explained everything to me, and he was very straightforward. I understood all the pros and cons of the surgery and that there would be a long recovery.” 

Under the care of Dr. Hittelman, Joshua was able to put his fears of the surgery aside and focus on the outcome––which ultimately would give him the ability to live his life more fully.

“Now that Joshua has had the surgery, he has completely blossomed," said Dr. Hittelman. "He is an active, vibrant young man who subsequently joined a spina bifida traveling basketball team and is now planning on his college studies. I could not be more proud and impressed with Joshua. He has done great, and I am confident he will continue to do so.”

“I’m glad I made the decision to have the surgery,” said Joshua. “I have really great friends and now I am more outgoing. I no longer worry about losing bowel control. Instead, I’m busy focusing on school and spending more time with friends.”