Charlie's Big Heart
Supporting patients affected by tracheostomies, congenital heart disease (CHD), and CVICU or ITU stays at Arkansas Children’s Hospital— and the adults who care for them.NOTE: We're in the process of seeking nonprofit status and are unable to accept financial donations at this time.
Inspired by a tiny human with a giant heart.
Charlie was diagnosed with congenital heart disease in utero and was born with a severely enlarged heart. His CHD and floppy airway caused him to require a trach. While his life was too short, it's a story too big not to share. He is why we do what we do.
What We Do
We are dedicated to supporting those affected by tracheostomies, CHD, and CVICU or ITU stays by providing:
Toys, stuffies, games, and other comfort items
Strollers and wagons for trach babies
Caregiver support for travel, housing, food, and funeral expenses
Charlie's Birthday Baskets in honor of Charlie's birthday each year
Scholarships to staff wishing to further their education and training
Staff happies for special weeks like Nurses Week and Respiratory Therapy Week
How You Can Help
Provide Comfort Items
Toys | Games | Strollers | Wagons | & More
Help make patients and families feel more comfortable in the hospital by donating items that spark joy, play, comfort, and connection.
Support Caregivers
Food | Travel | Lodging | Funerals
Make a donation to help families who are splitting time between home and hospital and facing some of the most difficult decisions one can face.
Show Staff Some Love
Scholarships | Gifts & Happies
Offer financial support to staff who want to further their training and spread some love during Nurse's Week, Respiratory Therapy Week, and more.
Fill Up a Basket
Charlie's Birthday Baskets
Every year around June 12, CVICU and trach patients are given a basket full of books, toys, blankets, sheets, and more in honor of Charlie's birthday.
Charlie's Story
During his 20 week anatomy scan, Charlie's heart was found to be severely enlarged. Thus the name, "Charlie's Big Heart"!In proceeding weeks, Charlie was diagnosed with severe congenital heart disease, and his prognosis for survival in utero was dim. The official diagnosis was pulmonary atresia (PA) with intact ventricular septum (IVS), severe tricuspid dysplasia, severe cardiomegaly, and reduced heart function. A "one in 200,000" kind of CHD. Even though he developed serious arrhythmias in utero, Charlie defied the odds and was born crying, and breathing, on June 12, 2025.After birth, he was transferred to Arkansas Children’s Hospital, where he continued to defy the odds, surviving several surgeries (the Starnes, a diaphragm plication, and a tracheostomy), NEC, a prolonged code event, ECMO, multiple infections, cath procedures, and a host of ups and downs. But he took it all in stride. In spite of his medical complexities, he was an easy going, happy baby who was loved and doted on by all who cared for him, especially deeply loved by his parents.
Charlie grew stronger and bigger, again, defying the odds, and he was discharged home on March 2, 2026. From then until his passing, on April 12, 2026, he enjoyed time at home playing with his toys, watching Bluey, sitting outside on the porch, pulling his dad’s beard, bouncing in his bouncer seat, singing songs with mom, listening to music, reading many books, getting lots of kisses, and giving so many smiles. When he was happy, which was most of the time, he would kick his little feet and scrunch his hands while giving a big, snaggle-toothed smile.Charlie was an observer. He often studied his toys, people, and places with great focus. In spite of his rough start to life, he worked hard to catch up on developmental milestones, making great progress, and proved to be such a smart little guy.He was well known for his many facial expressions, his big squishy cheeks, and his adorable chunky baby rolls. His joyful, sweet spirit and strength are an inspiration, and his life, while it was too short, had so much meaning to those around him. We, his parents, consider it the honor, joy, and privilege of our lives to have loved and cared for him for 10 months.
Loving Charlie split our hearts wide open and opened our eyes and minds to many things we'd never had to think about before. We now know what it's like to live out of a hospital room, or communal hospital living space, for months.We have seen what it's like for families to be forced to split time between a home, a job, and other children that are hours away and leave their critically ill child at the hospital. We've born witness to caregivers making some of the most selfless and difficult decisions one can possibly make, like comfort care.And unfortunately, we've experienced firsthand what it's like to plan our baby's funeral, as we saw others do. These choices are not easy ones and carry with them heavy financial and emotional weight. Because of Charlie, we want to help lighten the load for others faced with similar situations.
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