Why Organ Donors Matter to Children: An Inside View

Paisley Billigmeier, 11, loves reading chapter books. She is a bit shy until you get to know her. Paisley can also be a happy, funny and sassy girl, according to her mother, Joanna Billigmeier. 

“She has the best of personalities and everyone who knows her loves her,” Joanna said.

The Silver Spring, Maryland-based family also consists of Josh Billigmeier, Paisley’s older sister and two brothers who were also adopted from China with her.

Despite the Billigmeier’s heartwarming journey, Paisley was born with a heart condition called heterotaxy syndrome. 

“All of her organs are in different places than they would normally be. She had half a heart [called a single ventricle] and it was backwards in her chest [dextrocardia],” Joanna said. “When she came home, we expected to hear that she would have a palliative surgery called a Fontan, but she was not a candidate. She ended up developing a rare condition called protein-losing enteropathy [PLE], for which the only cure is a heart transplant.”

Joanna further explained that in the last year, Paisley started having heart arrhythmias which are irregular heartbeats.

She added, “Arrhythmias can trigger cardiac arrests and she had a very scary cardiac arrest. As we were getting ready to travel out of town last year, Paisley suddenly went into cardiac arrest and was saved by bystander CPR at the airport!”

While winding back the hands of time, Joanna explained that Paisley did have one surgery in China called a Glenn procedure. Joanna noted that before she came home from China, she and her husband knew that Paisley was labeled terminal and there was a chance that their daughter would not survive. Paisley was diagnosed with heterotaxy after she came home and developed PLE shortly afterwards. She was terminally ill with heart failure and liver failure. Once she developed PLE, she would not have survived long without a heart transplant, according to Joanna. 

Despite these medical hurdles, something good happened the day before Paisley’s third birthday. The young child received a heart transplant in 2015. Before her transplant, Paisley was very sick and often felt sad and miserable. 

“We know that Paisley’s heart donor was a little girl around her age, but we don’t know any other details,” Joanna stated. “Paisley was given not just a chance at life, but she was given the strength to live life. Her transplant gave us a new little girl full of vitality and a zest for life that we hadn’t seen before, and it gave our family hope.”

Joanna shared that the Billigmeier family saw her run for the first time six months after THE transplant. 

Josh said that knowing that a heart donor made it possible for Paisley to receive a gift of life is a bittersweet feeling. 

“The loss of one life has brought new life to Paisley, and I’m eternally grateful to the donor’s family for choosing to pass on this incredible gift,” he said.

However, Josha and Joanna were told that Paisley’s heart would likely last 7-10 years. She just passed the 8-year mark in November. 

“She is starting to exhibit signs of heart failure, and we understand that it won’t be long before she will need to be listed for a second heart,” Joanna said.

Josh added that walking long distances is challenging for Paisley. She often faces random fevers or headaches. Anxiety arises from not knowing if her chest pains are simple heartburn or a sign of heart failure. 

The Billigmeier family, and especially Paisley, is proud to promote organ donation awareness through Infinite Legacy of Donate Life Maryland. Paisley knows that it is important to be a registered eye, organ or tissue donor.

“By being a donor, you can give someone like me another chance at life. You can help people like me live and follow our dreams!” Paisley said. “I would like to be a geologist, a paleontologist and a vet or zoologist.”

Josh wishes people understood that choosing to be an organ donor involves no risk and can offer immense hope to others. Paisley’s mother had one final thought:

“Our long-term wish for Paisley is that she has the best quality of life she can possibly have. We would love to see her grow up and fulfill all of her dreams. We are thankful for every day we have with her,” Joanna said.

Visit Donate Life Maryland at https://www.donatelifemaryland.org to learn more about organ, eye and tissue donation.