At the age of 5, Jenna-Lee loves learning from her teachers at school and is excited to head back to the classroom this fall. She also loves dancing, playing piano and belting out her favorite songs. She can often be found helping to care for her younger brother, Indio, age 3, and engaging in spirited debates with her older sister, Jay-Lee, age 6. Most people who encounter the outgoing child have no idea she was born with a heart defect and underwent open-heart surgery as a toddler.
“It’s a scary thing”
Jenna-Lee was born with only one valve in her heart and it was leaking, according to her mother Andrea Bailey, who is busy raising Jenna-Lee and her siblings. Doctors at Connecticut Children’s Division of Cardiology were concerned that she was too weak to survive surgery at that point, so they kept a close eye on her.
“When she was 2 years old, we had the surgery. It was very hard. After the surgery, Jenna-Lee went into cardiac arrest. Her heart failed but they were able to start it back again,” says Andrea. “It’s stressful when a mother sees her child there with all these tubes. It’s a scary thing.”
But the surgery was successful. When Jenna-Lee is a little older, she’ll return for a follow-up procedure for further repair on one of her heart valves. Her cardiology team, led by Brooke T. Davey, MD, will be there to take care of her every step of the way.
“My family’s together and that’s all that matters.”
Caring for Jenna-Lee after the surgery was challenging. Andrea had to take precautions to ensure the wound stayed closed as it healed, and she cleaned it regularly.
Then came added complications – not for Jenna-Lee but for Andrea, who was diagnosed with Stage II breast cancer.
“It was very difficult because we were still going in for frequent checkups for Jenna-Lee. I wanted to help her but needed help of my own,” says Andrea. Fortunately, relatives were able to help both of them.
In addition to all of that, the family learned the home they purchased and moved into just a few years earlier was unhealthy and in desperate need of repair.
A contractor who’d been hired to assess the roof looked around the rest of the home and realized there were other issues in need of attention for the health of the three Bailey kids. He referred the family to Connecticut Children’s Healthy Homes Program (Healthy Homes).
Connecticut Children’s connects families with a vast network of partner programs, both medical and non-medical, to set children up to thrive. Healthy Homes is one of them. The program raises awareness about the critical link between housing quality and health, helping families like the Baileys find and fix health hazards in their homes. Healthy Homes serves families throughout Connecticut, from Stamford to Killingly, Litchfield to New London, and every other part of the state.
After conducting an assessment, Healthy Homes was able to remove asbestos and mold from the Baileys’ basement and lead from elsewhere in the home – toxins that could have caused long-term health and developmental concerns for the Bailey children. In addition to replacing tiles, drywall and windows, they also added safety bars to the windows in the children’s bedrooms to prevent falls.
Healthy Homes relocated the Bailey family to a hotel during part of the renovations to avoid contamination. Andrea was touched when she heard how Jenna-Lee described the experience: “My family is together and that’s all that matters,” Jenna-Lee told her teacher.
“I’m happy that she understands,” says Andrea.
The Baileys returned home once the work was completed and air quality testing showed it was safe. Jenna-Lee, Jay-Lee and Indio are thrilled to be back in their family home – and Andrea is thrilled to know that it’s a safe place for them to grow up.
“I am going to make sure that if I see anybody that’s going to need the help, I’ll refer them to Healthy Homes. I know a lot of people don’t know about this and we need to spread the word,” says Andrea.
While Andrea continues to undergo treatment related to her cancer, she says Jenna-Lee has fully bounced back from her heart surgery. “She is doing well now. She has recovered,” says Andrea.
Their visits to Jenna-Lee’s cardiologist, Dr. Davey, are now down to annual check-ups and Jenna-Lee has no restrictions on her physical activity, according to Andrea. “We try to let her be as normal as possible,” she says.
And at the young age of 5, she has learned to ask plenty of questions. After she gets answers, Andrea says Jenna-Lee’s favorite response is typically, “Carry on!”
Jenna-Lee has also learned to speak her mind in a respectful way. “That is unacceptable,” she once told a relative who kept her waiting too long. Known to argue her case, she aspires to be an attorney when she grows up.
For now, she is focused on being a kid – and growing healthy.
“She is gifted with so many things. You can’t tell her she has a heart problem. If you don’t see the scar, you would never know,” says Andrea.