FAIRBORN – Isabella Siemaszko has not had what many would call a normal childhood. She has spent much of her life going in the hospital, and this year, the young Fairborn resident underwent an organ transplant. But despite experiencing all this, Bella has maintained a positive attitude, and she has an appreciation for the everyday activities most people take for granted.
Bella’s mother, Destiny Siemaszko, said her daughter does not fear the frequent hospital visits.
“She doesn’t really freak out as much as most kids normally do when they’re in the hospital, because it’s all she’s known her whole life,” she said.
Born in January of 2010, Bella didn’t get to go home until four months after she was born. She had jaundice, not uncommon among newborns, but there was something else that was wrong. A liver biopsy at Dayton Children’s Hospital proved inconclusive, so Bella went down to Cincinnati Children’s Hospital, where doctors diagnosed her with biliary atresia, a disease where the common bile duct between the liver and small intestine is either missing or not functioning correctly. It’s rare, affecting only one out of about 15,000 to 20,000 infants, according to Cincinnati Children’s.
Bella was in and out of the hospital for two years. When she was 6 months old, she had a feeding tube that wasn’t removed until around her second birthday. Her health improved after this, and she seemed to be on the track to normal.
Last July, however, Bella’s health started declining. She was constantly getting sick, her energy levels were low and she fluid started building up in her stomach.
“She had nine pounds of fluid in her stomach, and she looked as if she was nine months pregnant,” Siemaszko said. “And all the other kids would make fun of her and ask why she’s so fat.”
In November of 2014, doctors decided Bella needed a liver transplant, and they placed her on the waiting list. Five months later, on March 1 of this year, her family received a call telling them that a liver was available. The transplant was far from guaranteed, however.
“Doctors go to look at the liver, and if they see that it’s not going to be compatible, they will call off the surgery and you go home,” Siemaszko said. “You have to come in to get prepped for surgery, but ultimately they can say, ‘no we’re not going to do the transplant,’ and send you home.”
Bella and her mom got to the hospital at 8:00 that night, but they heard nothing about the liver until 9 a.m. the next day when the doctors said the transplant was good to go.
“I didn’t know up until the point of her surgery that they were going through with the surgery,” Siemaszko said. “It was the most anxious moment of my life.”
On March 2, after five-and-a-half hours of surgery, Bella walked out of the surgery room with a new liver. Quickly, her energy levels went soaring.
“She is a fireball,” Siemaszko said. “You cannot keep her down, she has so much energy that I have to pop Five Hour Energy all day every day just to keep up with her. She doesn’t want to be in bed, she wants to be out there, she just wants to go, go, go.”
Despite being only five years old, Bella is fully aware of what she has gone through and she does not shy away from it.
“She would go up to strangers and tell them, ‘Doctors cut me open and fixed my liver!’” Siemaszko said. “And for strangers, that kind of sets them back, like, ‘this kid is talking about her stomach getting cut open.’”
Thanks to her new liver, Bella now experiences a more normal childhood.
“Before the transplant, she did a whole lot of sleeping and not a whole lot of anything else because we had to restrict her activities,” Siemaszko said. “Now all she talks about is how she wants to go back to soccer, she’s so excited for cheer, and she’s outside practicing her tumbling that she couldn’t do before. She couldn’t even run five feet without getting winded before.”
Bella’s life is not completely normal yet. She still has occasional visits to the hospital for biopsies to make sure her body accepts the liver, but she and her family are not complaining.
“We traded a very poor quality of life for a better quality of life because now she can function like normal kids can, she doesn’t have to worry about being tackled and her spleen rupturing,” Siemaszko said.
Due to HIPAA regulations, the identity of Bella’s organ donor remains a mystery to her and her family. Her mother has written a letter to the donor’s family, her transplant coordinator will deliver it to them, and they can decide whether they want to meet Bella.
“I pray that they will because I want to meet the people who helped to save my daughter’s life,” Siemaszko said. “I hope that I can give the family some peace of mind because it’s sad that they lost a loved one but at the same time, I want them to see how they saved this five-year-old’s life and how well she’s doing and how much she’s living life now.”
The organ donation has changed Bella’s life for the better.
“She’s so positive and cheerful despite the trials and everything she goes through in her life,” Siemaszko said. “She had to miss school, she couldn’t play a certain way, and now her life’s completely flipped.”
The Siemaszkos have partnered with the Children’s Organ Transplant Association (COTA) to raise $45,000 to help cover transplant-related expenses. They are currently looking for volunteers to help with the fundraising process. Anyone interested in helping can visit COTAforIsabellaS.com for more information. They can also contact Christen Younger at 937-718-3197 or at firstname.lastname@example.org.
To help raise the money, Bella and her family will have a booth at Fairborn’s block party from 4-10 p.m.Friday, July 3. Visitors will get the chance to meet Bella, donate money and register to become organ donors.