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Sunday, May 20, 2018
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Multiple organ recipient, 3, tries for normal life

TAMPA — Adonis Ortiz is like any other 3-year-old boy.

He wears light-up sneakers with “Cars” characters on them. He loves playing with his mom’s smartphone and rolling around outside with the family dog. When he turns 4, his parents will put him on a T-ball team; he already plays the game in the family’s living room with an inflatable bat and a tennis ball.

The only visible differences between Adonis and any other little boy is his feeding tube — connected to a “Toy Story” backpack that he carries at all times — and the twisting, purplish scar on his stomach from his surgery last year.

Adonis made international news in October when he received a five-organ transplant in Miami. Now that he is recovering, he has been able to return to his Tampa home and begin living the life his parents, Aracelis and Exmir Ortiz, always envisioned.

“Here at home, he can do whatever he wants,” Aracelis Ortiz said.

In his three years, Adonis has had more than 20 surgical procedures and spent only about nine months at home, his mother said. He was born with gastroschisis, a birth defect where the abdominal organs protrude through a small hole near the umbilical cord.

It was too dangerous to operate while she was pregnant, Aracelis said, so just hours after Adonis’ birth he underwent his first surgery to place his intestines back inside his body. Shortly afterward, it was apparent the organs were too damaged to function properly and Adonis would need a transplant.

After several other procedures and months on a transplant list, Adonis received a new liver, pancreas, stomach and small and large intestines at Jackson Memorial Hospital on Oct. 28.

“And four days later he had a big old smile on his face,” Aracelis said.

Adonis was allowed to come home to Tampa in late February, but every Wednesday he and his mother make the almost five-hour drive to Miami for follow-up doctor visits on Thursday mornings. Adonis doesn’t mind, though, Aracelis said. He’s used to doctors by now.

“He gives them high fives,” she said.

Adonis will need the feeding tube until he learns how to eat solid food, Aracelis said. Lately he has practiced eating a few teaspoons of pudding, yogurt or Jell-O.

His anti-rejection medications weaken his immune system, so he wears a mask when he goes out in public, his mother said. Aracelis keeps a big jug of hand sanitizer on a table by the front door of their house. He can’t go to the park because he could be exposed to germs from other children, so Aracelis hopes the Make A Wish Foundation grants Adonis’ request for a swing set for the backyard.

His doctors say he is recovering well, and as long as he continues to do so there is a chance he won’t need another transplant when he is older, Aracelis said.

Data from the Centers for Disease Control and Prevention shows that about 1,800 American babies are born with gastroschisis every year. The cause is unknown, although it is more common in babies born to younger mothers, according to the Children’s Hospital of Philadelphia. The long-term prognosis can be “very good,” according to the hospital’s website, but babies born with severe intestinal damage — like Adonis — need to be watched closely.

Aracelis said she and her husband have started looking into preschools for Adonis, where teachers will be trained to address his needs. She said she hopes to return to her nursing job, which she quit during Adonis’ months of treatment and recovery in Miami.

Insurance didn’t cover all the costs of Adonis’ procedure, and bills still are rolling in, Aracelis said. The special milk Adonis consumes through his feeding tube is expensive; so is the gasoline needed to drive to and from Miami every week, she said.

A donation page was set up for Adonis’ family through the Children’s Organ Transplant Association with a goal of $30,000 to help cover the cost of his surgery and any future treatments Adonis might need. So far the page has collected about $2,400.

But money is not Aracelis’ biggest worry right now, she said.

When she and Adonis are at the grocery store or some other public place, people fawn over him and feel sorry for him when they see his feeding tube or surgical mask.

Aracelis hates that, she said. He’s not sick — although she has to work hard to keep him from becoming ill again.

“I never treated him like a sick kid,” she said. “I honestly think that’s why he came out the way he did.”

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Twitter: @LizBehrmanTBO

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