Five-organ transplant helps child deal with rare digestive disorder
Kendra Acosta is an energetic 10-year-old as she sits in the living room of her Penn Hills home, snacking on shredded cheese, regularly interrupting her father, Roger, as he talks, and dreaming of a vacation to Disney World.
She talks in an animated manner about her artwork, the daily YouTube show she produces with her sister, and how she misses being in the classroom at her school.
That’s completely different than two months ago, before she had a five-organ transplant at Children’s Hospital Pittsburgh of UPMC to correct a rare digestive disorder. Then, her father said, she was rather shy, tired quickly and received all of her nutrition intravenously.
The reason for her change is easy to understand, said Dr, Kyle Soltys, associate professor of surgery and part of her team at the Starzl Transplant Institute: “She feels better.”
From the time she was born in Puerto Rico, Kendra has had countless hospital stays, numerous surgeries, blood transfusions and a 12-day induced coma to deal of with a condition known as mega-cystis micro-colon intestinal hypo-peristalsis syndrome. There have been fewer than 500 known cases of the condition, which essentially means the
digestive system doesn’t work, since it was identified in the 1970s.
Kendra’s family — including mother Sandra, older brothers Brayan and John and younger sister Kianny — moved to Pittsburgh in 2013 so she could be near doctors who could stabilize her condition and do a transplant when a compatible donor could be found. The family was featured in a 2013 story to raise awareness of the Post-Gazette’s Goodfellows Fund, which helps needy families at Christmas.
“It took her [body] a long time to declare the kind of transplant she would need,” said Dr. Soltys. Initially, Kendra was waiting for a colon and small bowel transplant, but before she stabilized and a match could be found, she also needed a stomach, liver and pancreas.
Because Kendra was so vulnerable to infection, she stayed in near-sterile conditions at home to protect her. She used a catheter several times a day to empty her bladder, and a nurse was with her all the time when she went to school.
Three times — the latest, before the transplant, was in 2016 — the family received an emergency phone call that a possible match was available. But either the organs weren’t appropriate or Kendra was the backup in case the first choice couldn’t make it to the hospital on time.
“By then, we didn’t think the transplant would happen,” Mr. Acosta said.
While waiting continued, Kendra developed other conditions including pancreatitis, which eventually was relieved by surgery, and colitis, a painful condition she had to learn to live with. She had to be put on a catheter four times a day to eliminate fluids and had a stoma created to bypass her stomach.
What Mr. Acosta called a “near-normal” life included covering Kendra’s mid-section in plastic wrap when she went swimming to keep water out of open areas and the nurse who accompanied her to school. Whenever she tried to eat, which doctors encouraged because it is a learned process, she had trouble keeping food down.
“Our life has been around
her,” Mr. Acosta said without a hint of bitterness. “We don’t have a lot of friends. We concentrate on Kendra and what she needs to feel better.”
Things changed after Feb. 11, when Kendra underwent 10 hours of transplant surgery. Within 24 hours, doctors removed the feeding tube. Other than two minor bouts of transplant rejection while she was still in the hospital, Kendra has made steady progress.
“I saw how she changed from a very shy girl to a completely different person,” Mr. Acosta said. “We’re getting to normal. She’s eating a lot and gaining weight.”
Of course, this hasn’t all been easy — Mr. Acosta has been on family medical leave from his job as a customer care representative for PNC Bank since the surgery. The family has established a Go Fund Me account to help with expenses.
Children’s is among fewer than a dozen sites across the country that can perform the five-organ transplant, which Dr. Soltys said is done a few dozen times nationwide each year. The success rate has grown during the past 15 years because improved treatment of digestive disorders means fewer patients need transplants, and those that do are healthier when they have surgery.
“Kendra is a testament to her parents and the intestinal care she received,” Dr. Soltys said. “That didn’t happen 15 years ago.”
Dr. Soltys said Kendra will always need to use a catheter — bladders can’t be transplanted — and take anti-rejection medication. For now, she still has the
stoma so doctors can check the transplanted organs, but that should be reversed in a few months.
“She’ll be able to do all the things everyone else can do,” the doctor said. “She should have a normal, healthy life.”
Kendra already knows what the future holds. She should be able to travel by this time next year and “our first mission” is Disney World, she said.
In addition, her countless hours at Children’s exposed her to several things she plans to pursue: Her room is filled with artwork, from paintings and drawings to pottery. Through her exposure to a media studio, she has developed such a passion for video that she and Kianny have their own YouTube show, Kendra and Kianny’s Daily Show.
The show reviews the weather and historical events such as famous birthdays, plus shoutouts to friends and family. The tagline the youngsters chorus at the end of each show highlights the family philosophy: “Remember, if you stay positive, anything is possible.”
The Post-Gazette has run the Goodfellows campaign since 1947. It accepts contributions throughout the year and acknowledges them in the newspaper during the holiday season. You can send a tax-deductible donation to Post-Gazette Goodfellows, Box 590, Pittsburgh PA 15230, or you can donate online at www.post-gazette.com/goodfellows.