Payton Himo was born with only half a heart, but it’s brimming with hope for a lifesaving transplant.
The Portage, Ind., girl has had seven open-heart surgeries in her seven years of life, among other health problems, including a stroke and countless hospital stays. Taking medications is as common for her as playing with dolls. Being hooked up to tubes and wires is her norm. Hospitals have become her second home.
She’s currently at Riley Children’s Hospital in Indianapolis.
“There is not a day that goes by without Payton asking when we can we go home. It breaks my heart,” said her mother, Matilda Perez-Himo.
Payton’s congenital heart defect has led to other serious health complications and complex medical treatments. She’s been playing catch up since her first breath.
“It took years for her to learn how to even eat because she was on a feeding tube for so long,” Himo said. “It’s been a never-ending battle.”
Himo does her best to keep her daughter busy and upbeat.
Payton enjoys doing crafts. Her hospital room is adorned with posters, stuffed animals and rainbows. A big-eyed cartoon frog rests atop her IV machine. Her beloved dolly, Dora, rarely leaves her side. Her bed is covered with beads, Legos and books.
“She works on homework to make her teacher happy,” Himo said.
Payton is repeating first grade because she missed 13 straight weeks of attendance last year. She’s learning math, mostly adding and subtraction. Her life hasn’t added up like most other children but it’s all she’s ever known.
“Payton is just very homesick,” Himo said recently.
Recently, Payton underwent yet another medical test, with no anesthesia.
“She did it like a champ, watching the doctor do the procedure. She is amazing,” Himo said.
Himo, 44, has stayed with her daughter around the clock in Indianapolis, just like their stays at other medical facilities. Before Payton’s birth, Himo worked for nearly 20 years in a dentist’s office. These days she works odd jobs when she can, while living off her daughter’s monthly $650 disability check.
“I’m not a responsible employee because I’m always in and out of a hospital,” she said. “Payton is by far the hardest job I ever had but truly the most rewarding. No amount of money could ever replace that.”
Himo posts periodic updates about Payton on her Facebook page.
Her latest update stated, “They started Payton through the process of preparing to be registered on the list to have a heart transplant. This was not an easy decision, but without going to Philadelphia, this is the only option here.
“One of the blood works that returned however brought with it another obstacle. It appears Payton has an extremely high amount of antibodies in her blood due to the countless infusions that she has endured in the last 7 years,” Himo wrote. “The doctors say it would be extremely hard to find a heart that would be compatible for her.”
In November 2018, they spent five weeks at Children’s Hospital of Philadelphia to treat Payton’s latest complication, protein-losing enteropathy, the loss of serum proteins from the digestive tract, according to that hospital. It led to edema (retention of fluid in tissue) and ascites (retention of fluid in the stomach). There is no cure.
“The procedure was new and experimental,” Himo said. “Unfortunately, it was not successful.”
Himo hopes to return to that hospital soon for another procedure. Payton’s only other option is a heart transplant that may never happen.
Somehow, Payton is full of smiles despite the constant pain from her protruding stomach. It’s painful just to look at photos of her belly.
“Payton has no clue what we are facing,” Himo said.
Himo was told by Payton’s doctors that she should be transferred to Lurie Children’s Hospital of Chicago, which has the specialized care she needs. Payton was instead transferred to Riley in Indianapolis, an in-network hospital.
It comes down to an issue of insurance coverage through Indiana Medicaid, said a hospital spokeswoman.
Himo’s latest Facebook update states, “Please continue to pray that we get to where we need to go.” An online fundraising page has been set up to help with related costs and bills.
Himo and her daughter have courageously clung to their faith and to each other throughout this journey, since Payton’s first heartbeat in utero.
“She’s been through so much yet she still has hope,” Himo said.
Payton was asked what she would do if she could leave the hospital. In a touching video from her hospital bed, while holding her doll, Payton said she’d go to a “play place with a swimming pool.”
She simply wants to go play like every other kid.
What a sweet heart, huh?