A lung and liver transplant would be hard for anyone to understand.
But in the mind of a 9-year-old child, the diagnosis is mystifying.
Heather Gwin tries her best to understand. The Greenwood girl has asked doctors questions about what would happen when she gets her organ transplant, how the surgery will work and what it will feel like.
Asking questions helps her be brave, until the fear creeps back in.
“She calls it the ‘T word.’ She doesn’t like to say transplant,” said Jennifer Gwin, Heather’s mother. “She likes to think about things, but a lot of times that stresses her out.”
Heather’s body is slowly being choked by the effects of cystic fibrosis. The disease has kept her body from breaking down mucus, and the only way to save her life is a lung and liver transplant. Her family splits time between Indiana and Missouri, waiting for the phone call from the transplant facilitators.
Despite a lifetime of doctors visits, oxygen tanks and feeding tubes, Heather has tried to stay positive about the challenges she is facing.
“I don’t know how she does it. It’s a lot to deal with,” Jennifer Gwin said. “She thinks about life and death scenarios sometimes. But she stays upbeat and wants to get through this.”
In the hallways and on the grounds of the St. Louis Children’s Hospital, Heather is a bubbly and gregarious social butterfly. She talks to anyone she meets, and seems to wear a permanent smile during the day.
With an iPad her mother gave her, Heather can video chat and text with her family when they’re far away.
“A lot of the time, she’s happy and good. But she’s sick, so she doesn’t feel good sometimes,” Jennifer Gwin said. “It’s a life that she’s always lived, so she’s used to it. But it’s still hard.”
When Heather was born, she spent the first 10 months in the hospital. During that time, she was diagnosed with cystic fibrosis.
The disease affects the entire body. Thick mucus builds up in the lungs, leading to infections and increased difficulty breathing. In the pancreas, it prevents the release of enzymes that help digest food. Liver failure occurs when mucus blocks the bile duct.
About 30,000 people are affected by cystic fibrosis in the U.S., according to the Cystic Fibrosis Foundation.
Heather entered foster care when she was less than a year old. Jennifer Gwin wasn’t her initial foster family, but instead was tagged as a “respite” home. When the foster family needed help or some relief, Gwin would watch Heather.
In 2010, Heather’s foster placement was disrupted, and she needed a new home. Jennifer Gwin then started the process to adopt her.
“By the time she was 4 ½, she was officially a Gwin,” she said.
From the start, Heather has struggled with significant health issues. The multiple transitions in and out of hospitals, as well as with different foster homes, only exasperated the effects of cystic fibrosis.
She was underweight, had very little energy and struggled to breath as the disease overwhelmed her lungs.
“Even when she first came to me, they were already talking about transplant,” Jennifer Gwin said. “We knew this was a possibility going into it.”
Every two years, she was entering Riley Hospital for Children at Indiana University Health for a kind of “tune-up,” given a treatment of antibiotics to keep bacteria at bay and clearing her airways of mucus.
By age 7, her doctors at Riley Hospital could see her condition worsening. The disease was catastrophically affecting her lungs, as well as hardening and destroying her liver.
Since the hospital does not do lung transplants, they recommended Heather go to St. Louis Children’s Hospital.
“For the next couple of years, we would follow up with them, go to St. Louis every couple of months and have Heather checked out,” Gwin said. “But by the beginning of 2015, she was in the hospital more than out. In July, they decided to keep her in St. Louis.”
The situation presented a significant logistical challenge for Jennifer Gwin and her family. Heather has 13 brothers, ranging in age from 5 years old to 24, some with their own challenging medical needs.
All of the children are adopted by Jennifer Gwin. She felt a calling to help these most vulnerable children, and has provided them both a stable home life and the medical care they need. Some of the children were foster children from Indiana that she adopted, and others have been adopted internationally from as far away as China and Ukraine.
It would be incredibly difficult to transplant everyone to Missouri, Jennifer Gwin said.
Instead, Gwin devised a way to keep Heather in St. Louis while her family stayed in Indiana. With the help of her parents, Mike and Karyn Gwin, they rotate between the hospital and their home in Greenwood.
For one to two weeks each month, Jennifer Gwin stays in an apartment provided by the Ronald McDonald House. Her parents meanwhile watch the rest of the children in Indiana.
Then, the two sides switch.
“I couldn’t just pick everyone up and move to St. Louis,” Jennifer Gwin said. “But I have awesome parents. I got lucky in that category. For the past year, this has been their life.”
Heather’s lungs are only working at 30 percent capacity. She uses a breathing tube and oxygen to help her scarred lungs, and a gastrointestinal tube delivers all of her nutrients.
“She has no appetite,” Jennifer Gwin said. “But she stays lively and spunky and happy.”
Transplant regulations require Heather to be 30 minutes from the hospital at all times. In the event a donor is found, they have to be ready to move quickly.
The entire family, including Heather, understands what has to happen for the life-saving transplant to occur.
“It’s a bittersweet situation. You’re kind of waiting for another child to die. It’s just so sad,” Jennifer Gwin said.
Without a transplant, Heather’s doctor estimates she has two or three more years with a decent quality of life. After that, she’d likely not be able to get out bed, and would increasingly rely on machines to keep her alive.
A transplant would help extend her life for 20 or more years, Jennifer Gwin said.
“Whatever we can get from it, we’re going to take. She won’t be able to live with the lungs and liver she has. She’ll continue to deteriorate,” she said.
Much of Heather’s treatment is covered by health insurance, but costs are still piling up, said Jennifer Gwin, a former pediatric nurse for Indiana University Health Methodist Hospital. The foremost expense is traveling back and forth from Greenwood to St. Louis.
“Basically, I’ve set up an entire second household,” she said. “We don’t have utilities, but we have rent and groceries and gas and transportation costs. It adds up.”
To help offset those costs, friends and family have helped set up fundraisers to benefit the family. They have put together yard sales, set out coin boxes to collect change, and sold everything from candles to bed sheets. So far, they’ve raised about $10,000.
The money raised is overseen by the Children’s Organ Transplant Association, a Bloomington-based group helping people needing transplants with fundraising.
The association keeps their money for them, then reimburses the family when they spend it on medical-related expenditures.
Even with the transplant, Heather will still face significant health problems. Cystic fibrosis will continue to attack her body. She’ll need anti-rejection medication to ensure the transplant takes and her immune system doesn’t reject the new organs.
But Heather will also be able to take advantage of new treatment options and medication to help the body get rid of mucus, keeping the disease in check.
“This will be an ongoing thing for her entire life. You have your transplant, and you literally trade one set of problems for another,” Jennifer Gwin said. “But the quality of life with the new organs is better.”
How to Help
The family of Heather Gwin are attempting to raise $100,000 to help with medical costs associated with her need for a lung and liver transplant.
Donations may be made through the Children’s Organ Transplant Association.
Information and donations: cotaforheatherg.com