Smiling and Living with a Congenital Heart Defect

Kayleigh is a happy three-year-old who smiles with her whole body.

“When she smiles, it lights up the whole room. She loves ponies and anything that sparkles and especially loves Minnie Mouse,” Carine, Kayleigh’s mom, said.

Kayleigh is also a Heart Warrior born with multiple congenital heart defects (CHDs). The right ventricles of her heart are severely underdeveloped, and she has valve abnormalities and small holes in her middle wall.

In addition to these CHDs, Kayleigh has Hirschsprung’s disease, which affects her large intestines, and an atypical formation of blood vessels in her brain that can change her blood flow, resulting in vision impairment, headaches, seizures, and even strokes.

Kayleigh has spent a lot of time at Children’s National Hospital in Washington, D.C. She had her first open-heart surgery at three-months-old. As she continued to struggle with intestinal issues, she was diagnosed with Hirschsprung’s disease.

She had her Fontan heart surgery in September 2020 at age two, where doctors made it possible for blood to flow straight to her lungs rather than through her heart.

Kayleigh has a lot of stress when it comes to routine doctor appointments, which, unfortunately, is quite often. Her mom does all she can to make the hospital room as comfortable as possible.

“Kayleigh has experienced so much trauma from everything she’s been through. She has a hard time sleeping anytime we’re in the hospital, which is not surprising,” Carine said.

She brings familiar items to the hospital, like Kayleigh’s favorite blankets, toys, and books.

She also has her very own Starlight Gown to bring with her to appointments!

Carine says having a child who is hospitalized often is always very stressful. She worries about her older son and who will watch him. Expenses add up quickly.

What helps get her through those tough times is the support of family, friends, and organizations like Starlight. And of course, knowing that her daughter is in great hands with the medical team at Children’s National.