'She's pretty incredible': Lombard girl recovers from heart transplant

A cartoon distracts Lucy Shannon from another screen in her hospital room that everyone else is watching.

She's twisting the ends of her pigtail, but she doesn't need prodding to keep the rest of her body still during an ultrasound to check the function of her new heart.

The Lombard girl knows only this about her old heart: It wasn't working.

"She's still so innocent in that she doesn't really completely comprehend what's going on," her mom, Betsy Shannon, says. "She's lived a lot of her life in the hospital, so it doesn't feel out of the norm for her to spend every day here."

But in other ways, her daughter is more perceptive than most 4-year-olds.

When visitors come to her room at Lurie Children's Hospital in Chicago, she wants to know their names. And when Betsy Shannon, with tears in her eyes, talks about what her daughter has endured, Lucy picks up on her emotion, looks up at her mom and offers a sweet smile.

"Her vocabulary is so medical," Betsy Shannon says. "She talks about 'getting the syringes and having a blood draw to test my potassium.' At 4 years old, it's funny that those things are just a regular part of her vocabulary. It's just her normal life."

Lucy also is becoming aware of those who have closely followed her life before and after her heart transplant. That community has sustained her parents and Lucy's namesake charity, a group her mother started with a friend to help other families with kids who have congenital heart defects.

The gift of life

Betsy Shannon became a "heart mom" the day her daughter was born with an underdeveloped left ventricle, a condition called hypoplastic left heart syndrome. It's rare - about one of every 4,500 babies born each year have it - and fatal without surgery.

Patients with the defect can undergo three stages of surgical repairs to try to fix their circulation. But during her recovery from the so-called Fontan procedure, the final corrective surgery, Lucy faced a slew of setbacks.

A heart catheterization in March revealed Lucy was in early heart failure. She transferred to Lurie Children's Hospital and doctors determined she needed a transplant.

"Her congenital heart disease was so significant, and her heart became weaker over time - she was also developing problems with her lungs - that the only option for Lucy's survival was a heart transplant," said Dr. Anna Joong, her pediatric cardiologist at Lurie.

Lucy was put on a waiting list for a donor heart as a "Status 1a" patient - the highest priority. Wait times vary by region and other factors.

"We've seen as short as one day on the waitlist and getting a heart, to even up to a year they could be waiting in the hospital for a transplant," Joong said.

Lucy would spend one month on the list until a donor heart became available.

"One of the first things you think about when that happens is that some family just made a selfless decision and probably at a point where I can't even imagine," Betsy Shannon said.

She doesn't know the donor family because of confidentiality reasons, but if she could say anything to them, it would be, "We're grateful that they gave us our life back."

A long recovery

Lucy remains hospitalized more than a month after receiving a new heart. She spent all of last summer in the hospital and has to work to get back her baseline strength, her mom said.

The family celebrates the small milestones on a Facebook page - "At the Heart of Lucy" - that has more than 2,700 followers. Earlier this month, her parents got a "tiny glimpse" into their new future.

"Yesterday Lucy was on room air for 4 hours! We left the room with only her monitor … no IV pole, no oxygen," Betsy Shannon posted May 14. "It's the first time in 353 days that Lucy did not need oxygen support. How crazy! Even if just for a short while, it was nice to be free."

Lucy will need medication every day of her life to keep her body from rejecting the donor heart. But the first year after a heart transplant typically carries the highest risk for rejection.

So her doctors conduct a number of tests - biopsies, lab work, echocardiograms - to catch any early signs of rejection they could treat by adjusting her medications.

It's difficult to pinpoint how long the donor heart will last, Joong said, because the available research dates to the 1980s, when heart transplants were first performed in the pediatric world. Based on that data, a transplanted heart can last on average 15 to 20 years for children ages 1 to 5.

"We are hopeful that as medicine continues to evolve, that time gets longer and longer," she said.

'Do anything'

Before she can go home, Lucy first has to transition to the Ronald McDonald House near Lurie Children's for about a month to six weeks so she can stay close to her doctors in the event of complications.

In the interim, everyone involved in her care tries to provide some normalcy in the hospital for Lucy.

"She has this very adorable habit that she likes to actually wash dishes in the morning for fun, and so the nurses would get a basin of water for her and she would have soap and she would play washing dishes in the morning while we were rounding up outside the door," Joong said.

Every night, her mom reads "Pinkalicious," Lucy's favorite book of the moment.

"She's pretty incredible, but it's because of her," Lucy's grandmother, Sue Morgan, said of Betsy Shannon. "She really depends a lot on her mom. … They have a mantra now: 'We can do anything for just a little bit,' and that usually gets her through things."

Mother and daughter are putting together a scrapbook of pictures of family and friends and strangers touched by Lucy's story.

"Just watching her go through everything with a spirit and a smile, kind of hard not to do what you can do to make her life a little better when you can," Betsy Shannon said.

And that's exactly what other families have done for her own.

'Healing hearts'

After Lucy was born, several of Betsy Shannon's friends asked how they could help, and they had a fundraiser for Lucy's medical bills in 2014. Brittany Sebesta, a photographer who has shot portraits of Lucy since she turned 1, also is hosting a sold-out session benefiting the family June 10, but will accept donations through her Villa Park-based studio, Lulu Moments Photography.

Betsy Shannon cites one example of the extra expenses not covered by the family's insurance: Her daughter last year needed no-fat formula that cost $400 for a case lasting at most a month.

"We've reached our out-of-pocket every year since she was born," she said.

The original fundraiser spawned LJ's Healing Hearts, a nonprofit group Betsy Shannon, an analyst for an investment services company, founded with her friend, Karyn Lange, to provide financial assistance for families with kids or adults with congenital heart defects.

"To be able to do that is really just kind of a comforting thing, even when we're going through something, that you know you can be that support for somebody else," Betsy Shannon said.

That support can help pay for medical bills, prescription formula, hotel stays, groceries or gas. Since its inception in 2015, LJ's Healing Hearts has helped 14 families with $15,000 in assistance and provided $3,000 to other organizations dedicated to families affected by congenital heart defects, Lucy's mom said.

She's also one of the group's organizers for "Have a Heart," an annual fundraiser that will move to a new venue - Pinstripes Oak Brook - Aug. 25.

"Sometimes it's a nice way to just stay busy and know that I'm not the only one going through this journey," said Betsy Shannon, who also has a 2-year-old son, Connor.

Her family doesn't yet know when doctors will release Lucy from the hospital, but they hope to hear in the next two to three weeks when she could transition to Ronald McDonald House.

What does she miss about home?

"I wish Connor was playing," said Lucy, her hoarse voice trailing off.

"You wish your brother was playing with you?" her mom asked. "Soon enough."