8-year-old Kyree Beachem has Hirschsprung’s disease, which occurs when nerve cells are missing in the muscle of the colon. (Courtesy Nan Beachem)
Nearly a week after Kyree Beachem’s rare triple organ transplant, she has been taken off sedation at Children’s Hospital of Pittsburgh of UPMC. The operation was a success and Kyree’s mother, Nan Beachem, is thrilled that Kyree is alert and holding her hand. Family and friends are happy to see Kyree’s eyes once again.
“It is like Christmas came early,” Beachem said.
Eight-year-old Kyree has Hirschsprung’s disease, which occurs when nerve cells are missing in the muscle of the colon. While the Pennsylvania child waited for an organ transplant, her condition became worse. Her liver was failing, and she’d already been admitted to the hospital because of bleeding.
Kyree’s family was surprised when doctors informed them that a potential donor had been found. At 2 a.m. on Wednesday, November 25, Kyree was rolled into the operating room for a transplant of her liver, small bowels and pancreas. During the transplant, doctors were unable to close her abdomen because of swelling from the new organs. Doctors were finally able to close it on December 1 by using a biosynthetic material to replicate the muscle structure of her abdomen.
Even as Beachem celebrated the transplant they’d waited five years for, a thought lingered in her mind. She knew that organs were woven into Kyree’s small, frail body because another child had died.
“I couldn’t wish for that call, because I knew that for us to get that call what had to happen,” Beachem said. “If it was going to happen, it was going to happen. But I couldn’t wish for somebody to lose a child. It wasn’t in my power to wish the transplant call would come.”
Shortly after the surgery, Beachem, who has posted about Kyree’s surgery on Facebook, was shocked and excited to receive a message from another family. After a few questions, “I knew 100%” it was the family of the donor, she said.
A connection between mothers
In Lancaster, Pennsylvania, the family of Arianna Morales grieved over the death of the 5-year-old child at Penn State Hershey Children’s Hospital. Arianna had lobar holoprosencephaly, a condition that keeps the brain from fully developing. Arianna had seizures and was able to say only a few words, but she expressed many of her emotions through her eyes and smiles. Before she passed away, Arianna was making strides in physical therapy, including gaining strength to stand and walk. Her death was sudden and due to an illness, said Evelyn Morales, Arianna’s mother.
“We are going to miss her because our whole lives revolved around Arianna. … But we are really happy that she was able to save some lives and that she is going to live on that way,” Morales said.
Four children, including Kyree, can live because of Arianna’s organs, Morales said; her heart and kidneys were also donated.
Arianna’s family read the CNN.com story about Kyree’s multi-organ transplant and reached out to Beachem. The mothers are now friends on Facebook and have shared encouraging messages with each other.
“I can see this little girl that saved my daughter. To me, it is what I would want. It’s to know the person who is a part of Kyree,” Beachem said after seeing pictures and videos of Arianna. “I think, actually, I am helping the donor’s mom and she is helping me, as well. It is just a very strong connection.”
They’re learning about the connections between Arianna and Kyree, too. Both girls shared a love for the movie “Frozen” and enjoyed dressing up as Elsa. Kyree has dressed up as Elsa for Halloween and has an Elsa doll she affectionately holds. Arianna loved dressing as Elsa, as well, and would light up when she heard songs from the Disney film.
At Arianna’s funeral on Monday, her family celebrated her life with a colorful balloon launch and music led by Arianna’s music therapist.
“Arianna, we know that she was a miracle to begin with and that she had a purpose,” Morales said. “To know that her purpose was not just touching the lives that we can see here, but now she is going to allow other people to live and maybe their future generations to come. … It is just nice to know that Arianna is still making a difference in the world.”
‘A beautiful life’
Rick Lofgren, the president of Children’s Organ Transplant Association, said it’s rare for a child to have a triple transplant, and even more rare for a child to receive the combination of organs Kyree received.
Lofgren said many parents struggle with the emotional decision to donate a child’s organs. Of the more than 120,000 people listed for a solid organ transplant with United Network for Organ Sharing, he said, less than 15% of that list are pediatric patients. With those odds, it’s more likely that adults would receive a transplant, he said.
“Children frequently are … disadvantaged in terms of organ donation because there are so many more patients who are adults waiting for transplants,” Lofgren said.
Beachem said she has a hard time putting into words how grateful she is that Kyree will live because of Arianna’s gift.
“The word ‘Thank you’ doesn’t seem adequate. It is almost like it is unspoken between us. She knows how grateful I am,” Beachem said of Morales.
After living connected to IVs for 22 hours a day, the transplants will free Kyree. She is excited to swim in the ocean and experience other firsts she wouldn’t have had without the transplant from Arianna.
“I think that Arianna had a beautiful life, with a beautiful family,” Beachem said, “and we hope to carry that on with Kyree.”
