Five-organ transplant at Miami-Jackson Memorial gives toddler hope

12/17/2013 5:11 PM

12/17/2013 5:25 PM

Adonis Ortiz, 3, has never been home for Christmas Day.

The Tampa toddler, who was born with a congenital disorder that caused his intestines to protrude through a hole in his abdomen, has spent each December in a hospital, recovering from surgeries and other medical procedures to treat his condition, known as gastroschisis, and related complications.

“Every single Christmas he’s had has always been in the hospital,’’ said Aracelis Ortiz, 25, Adonis’s mother. “What they would give us is a day pass, where he could go home for two hours, open his presents, and then come back.’’

This Christmas, the cherubic Adonis, who sports a tangle of curly brown hair and a ready smile, will move a step closer to finally being home for the holidays. At least he’ll get to spend this one out of the hospital.

Adonis and his mother will be staying in Miami, at the Ronald McDonald House, where a team of physicians from the Miami Transplant Institute at the University of Miami/Jackson Health System can keep an eye on the youngest child in the world to receive a multiorgan transplant without a colostomy — an opening that connects the colon to the abdominal surface for ridding the body of waste.

“At least he has another Christmas to celebrate,’’ Ortiz said Tuesday at Jackson Memorial Hospital, with Adonis on her lap playing with a roll of medical tape and transplant surgeons on either side.

Ortiz told reporters how the family — herself and husband Exmir Ortiz — had endured the fear and uncertainty of Adonis’s initial diagnosis, made while he was still in the womb, and the difficult choices that they faced.

Four months into her pregnancy, Ortiz said, physicians asked if she wanted to terminate the pregnancy. But Ortiz, a certified nursing assistant, had worked in a gastroenterologist’s office before giving birth to Adonis.

She was familiar with gastroschisis, and said she felt somewhat relieved that it wasn’t something worse.

“I’ve seen patients who were 18-, 19-years-old,’’ she said, “and they were fine. So I was like, ‘Why can’t my baby be the same?’

“I told them, ‘Thank you for giving me the option of abortion or not, but he’s coming with whatever he has’,’’ she said.

That decision launched the Ortiz family on a nearly three-year journey against long odds.

Ortiz’s eyes welled with tears, and her voice broke Tuesday as she described the uphill battle for even a glimmer of hope that her first-born and only son would survive.

“Everything that they always kept telling me was that he has a 50/50 chance,’’ she said. “Nobody would ever give me any other percentage until now. So, to hear that he has like an 80 to 85 percent chance, it’s a lot better than 50.’’

Ortiz held up her son and pulled open his button-down plaid shirt to reveal scars that run the length of his torso and across. A patch of tubes are attached to his upper abdomen and run to his nose, for feeding.

“He’s really strong,’’ she said. “After all his surgeries, he comes out with a smile, and I’m like, ‘How do you come out with a smile? They just chopped you up’.’’

On Oct. 28, Adonis underwent surgery at the Miami Transplant Institute and received five new organs: a liver, pancreas, stomach and small and large intestines.

The surgery culminated more than two years of medical procedures by physicians at St. Joseph’s Hospital in Tampa, where Adonis was born on Dec. 7, 2010. He immediately underwent his first surgery to place his intestines inside his abdominal cavity.

Five days after that first surgery, though, Adonis’s abdomen became bloated, Ortiz said, and physicians realized that the intestines that had developed outside of his body were damaged and the intestines inside never fully developed.

“He only had 28 centimeters of intestines,’’ Ortiz said. “A normal baby has 250.’’

Adonis then underwent two serial transverse enteroplasty (STEP) procedures, a medical technique used to extend a patient’s bowels and help the intestines absorb nutrients.

But Adonis’s condition worsened, and as a result of intravenous fluids and other nutrients, Ortiz said, the child’s other organs were damaged.

In August 2013, physicians diagnosed Adonis with stage 2 liver fibrosis, a scarring of the organ. He was transferred to Holtz Children’s Hospital at Jackson Memorial in Miami, and then underwent transplant surgery.

While multiorgan transplants are rare, especially among children, Adonis’s chances of making a full recovery are great, said Rodrigo Vianna, the physician who performed the transplant surgery.

“He will be able to do everything that a regular child does,’’ Vianna said.

“Survival for this type of transplant is more than 80 percent now in a year,’’ he said, “and 60 to 70 percent of those patients are still alive after five years. So that’s good odds for the many organs that he got.’’

While the primary damage was to Adonis’s intestines and liver, Vianna said surgeons decided to transplant his stomach and pancreas, as well, because those organs all share a vascular supply and are anatomically connected.

Surgeons at the Miami Transplant Institute have performed about 150 intestinal transplants in the past, Vianna said, but Adonis is the first child so young to undergo the procedure without a colostomy.

He is now undergoing therapy for speech, and to teach him to eat by mouth — something he has never done.

Jennifer Garcia, a transplant physician working with Adonis, said her biggest concerns are infection and rejection of the organs by his body.

“In intestinal transplants,’’ she said, “it’s very common.’’

But Garcia added, and Vianna concurred, that many physicians believe rejection occurs because of ostomies, which are surgical openings left in the abdomen.

She said doctors will watch Adonis for any signs of organ rejection, such as a high fever or diarrhea, and will conduct a colonoscopy if that occurs.

Vianna added that in his experience rejection occurs less frequently with multiorgan transplants.

Adonis will have to take antibiotics and immuno-suppresant drugs for the foreseeable future, he said. But the multiorgan transplant was likely the last surgery that Adonis will ever need for his congenital condition.

“His chances of rejecting are actually under 10 percent,’’ Vianna said. “I do think he has a very good chance to have a very good and normal life.’’

For Ortiz, whose husband and family members will join her for Christmas in Miami, this holiday will be particularly memorable, even if they have to spend it away from their home in Tampa. Adonis is scheduled to remain in South Florida for observation until about February.

“We’ve had our son for three years,’’ Ortiz said, “and they were saying that we would only have him for a few months. So trust me, it’s going to be very special for us.’’

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