A true `Champion': Cranston's Kyrie White, 4, named 2016 Children's Miracle Network Hospitals Champion Child

By Kelcy Dolan
Posted 7/19/16

The new face of the Children's Miracle Network Hospitals for Rhode Island has a big, bright smile, loves Donald Duck, and has been valiantly fighting Short Bowel Syndrome (SBS) his whole life. Four-year-old Kyrie White of Cranston was

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A true `Champion': Cranston's Kyrie White, 4, named 2016 Children's Miracle Network Hospitals Champion Child

Posted

The new face of the Children’s Miracle Network Hospitals for Rhode Island has a big, bright smile, loves Donald Duck, and has been valiantly fighting Short Bowel Syndrome (SBS) his whole life.

Four-year-old Kyrie White of Cranston was recently named the 2016 Children’s Miracle Network Hospitals’ Rhode Island Champion by Hasbro Children’s Hospital.

As the Champion Child, Kyrie and his parents, Nicole and Garrick White, will act as ambassadors for pediatric care and research, sharing their story and the great work being done at Hasbro as well as advocating for financial support for research and treatment. The White family joined champion children from across the country in Washington, D.C. in June, to share their story with a national audience.

When Nicole was just 14 weeks pregnant, she found out Kyrie had an in utero birth defect, gastroschisis – a condition in which the infant’s abdominal wall fails to fully close during his development. This left a portion of Kyrie’s intestines and stomach outside of his body.

Following the diagnosis, Nicole had to have regular ultrasounds that increased in frequency as she neared her due date. Kyrie was born on April 17, 2012, and would go into his first major surgery only six days later. In a best-case scenario, pediatric surgeons would be able to place the intestines and stomach back and he would be OK. In the worst-case scenario, the intestines wouldn’t be viable and would have to be partially removed.

Unfortunately, the latter was true, and during surgery, nearly all of Kyrie’s intestines were removed. He was left with only 12 centimeters of intestines when infants are typically born with 250, leaving Kyrie with SBS.

“He’s really considered an ultra-short gut kid,” Nicole said.

For the first 3½ months of his life, Kyrie was at Hasbro Children’s Hospital.

Nicole and Garrick, both 30, work for Rhode Island Hospital, in the pathology and housekeeping departments, respectively.

“We basically lived at the hospital those first few months,” Nicole said.

Because of his condition, Kyrie relied completely on total parental nutrition (TPN) and lipids through a central line for the first couple of years of his life. Because of SBS, Kyrie wasn’t able to properly absorb his nutrients and was frequently sick.

At the end of 2014, Kyrie received a STEP procedure, which creates grooves in the short intestines to better replicate the movement and shape of healthy intestines. Not only did this procedure help to reduce Kyrie’s vomiting, but his surgeon, Dr. Arlet Kurkchubasche, also discovered his intestines had actually grown to about 50 cm, which is unusual to see.

In 2014 Kyrie was admitted to the hospital nearly every month for complications with SBS. His parents estimate that in his four short years of life, he has spent two of them admitted into Hasbro. Luckily, in 2016, Kyrie has not needed to be admitted outside of his regular checkups.

Kyrie’s early dependence on TPN carries the possibility of liver failure later in life, but he has recently begun taking in nutrients orally with a blended diet and going to “food school.” Nearly immediately with the introduction of the nutrient filled blended diet, Kyrie began to grow gaining an inch in height and weight. He was able to tolerate much more food than was expected.

Despite his condition, Nicole said Kyrie is a ball of energy, and even with a “102 [degree] temperature he would be running around as if nothing’s wrong.”

The family is honored that Kyrie was picked as this year’s Champion Child.

“Kyrie is a good representation of a child that has been through adversity, trials and tribulations, but he did it all with a smile on his face and wouldn’t let them stop him,” Garrick said.

Because of his positive attitude, Kyrie was honored at the end of May and will share his story for the next year.

Kurkchubasche, Kyrie’s specialist at Hasbro, said that although he lives with a life threatening condition Kyrie has made “incredible strides” in his four short years.

“He greets every day with a smile,” she said. “This hospital has become his home away from home. He is the perfect Champion Child.”

Margaret Van Bree, president of Rhode Island Hospital, said families are the hospital’s best assets, sharing their stories and their connections to Hasbro. The Champion Child helps to support children from all over the state and the region by having the “courage” to speak out about their experiences.

“There is no greater joy than healing a child, and there are hundreds of kids that rely on us for the very best care. We have not seen this level of energy in a while. Kyrie is a very special kid,” she said.

The White family has become very close with the staff at Hasbro, and said the care they receive is unparalleled. They said the doctors and nurses have become family, and the hospital is like a second home. When Kyrie goes to Hasbro, he “acts like he runs the place,” making friends with everyone.

As brand new parents upon hearing the new of Kyrie’s condition, the comfort and support provided for the Whites by the staff was invaluable.

Both Nicole and Garrick said for the staff, working at Hasbro is more than a job. They will go out of their way to lend a shoulder to lean on, to offer advice and just to be there to listen and are “unbelievably compassionate.”

“It is always nice to see a smile and a caring face in those tough times,” Garrick said. “They say they are all about the kids, but they are there for families, too. They want to make sure parents feel comforted, too.”

The White family also wants to raise awareness about gastroschisis and SBS, because the cause is still unknown, but the condition itself is becoming more prevalent.

“We want to show people what Hasbro has to offer, to let a family who may be going through the same thing know there are specialist right in the backyard, they don’t have to go out of state for treatment,” Garrick said.

The White family is also in the process of starting a non-profit to help other families whose children have the same condition.

Because the condition is so rare, there is very little support for families when their children are going through more than 20 diapers a day, using expensive nutrient sources. The Whites have established the Pediatric Division of Short Bowel Syndrome Foundation. They hope to provide emergency financial assistant to families with loved ones with pediatric SBS as well as care packages for new patients with gas cards, hygiene products, as well as provide diaper assistance.

For more information and to follow Kyrie as he shares his story over the next year, visit Hasbro’s website, hasbrochildren’shospital.org, or its Facebook page.

For more information on the Short Bowel Syndrome Foundation, visit shortbowelfoundation.org.

SPECIAL GUY:

Four-year-old Kyrie White has been named the 2016 Children’s Miracle Network Hospitals Champion Child for Rhode Island. In this role, he and his parents will share their experiences with Hasbro Children’s Hospital to raise awareness and financial support. (Herald photos) HONORED:

Kyrie was honored at Hasbro Children’s Hospital at the end of May and will spend the next year as the hospital’s child ambassador. He received a gift from Hasbro filled with new toys. PRESIDENT:

Margaret Van Bree, president of Rhode Island Hospital, said that she hadn’t seen a Champion Child with as much energy as Kyrie White in quite some time.

SHORT BOWEL SYNDROME:

Kyrie White was diagnosed in utero with gastroschisis, which means a portion of both his intestines and stomach were outside of his body. Because much of his intestines weren’t viable after his birth, surgeons had to get rid of the majority, leaving Kyrie with Short Bowel Syndrome. DOCTOR TO THE RESCUE:

Dr. Arlet Kurkchubasche is Kyrie’s surgeon, and said in four short years he has made amazing strides in his health. HIGH ENERGY:

Everyone agreed that watching Kyrie run around, one would never suspect he was suffering from a life threatening condition. He embraces every day with a smile, one of the reasons he was chosen as a Champion Child.

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  • richardcorrente

    Another heart-warming story by Kelcy Dolan.

    She is an excellent writer. In fact, she was the first to write about my candidacy for Mayor back in January of 2015.

    She was professional, attentive and thorough and I felt completely comfortable with her questions. I've had other writers interview me in the last year and a half but none better than her.

    Thanks Kelcy.

    Richard Corrente

    Endorsed Democrat for Mayor

    Tuesday, July 19, 2016 Report this