Learn how love helps families thrive
The feeling in the doctor’s office is anxious. Apprehensive. Quiet. Dr. Lalitha Gopineti, Children’s Mercy Wichita Pediatric Cardiologist, holds up a quick sketch of a heart, complete with valves and chambers and points to different spots with her pen, explaining the procedure. “Does that make sense,” she asks.
For parents Cheyanna and Justin, these doctor’s appointments are regular, but they will never be routine. Echocardiograms. Heart monitors. Oxygen monitors. Pointing out the places on their son’s body that are tinged blue to nurses and doctors. These are the realities of caring for a child with a congenital heart defect (CHD).
Their 7-month old son, Holden, has already had one open heart procedure and Cheyanna and Justin are getting ready for his second. When they think about their first surgery, which took place when Holden was 12 days old, the family is tearful, but also grateful. “My child is here,” Cheyanna says. Her eyes are shiny, but she smiles a bit, too.
Cheyanna and Justin learned that Holden had a congenital heart defect at 20 weeks into his development during a routine appointment with Cheyanna’s obstetrician in Wichita, Ks. The doctor immediately referred the family to Children’s Mercy.
Receiving a diagnosis like this is devastating and frightening. In addition to questions about their child’s prognosis, families wonder how to best care for their child, how to balance work and doctor’s appointments, what their child’s future looks like and how they are going to pay for surgery and maintain their lives.
That’s where the Thrive program comes in. Thrive is a community-funded program designed to bring multi-specialty services to patients with acute or chronic heart conditions, like Holden, and their families by supporting their emotional well-being and providing resources both inside and outside the hospital. Through Thrive, all Heart Center patients have access to support from Social Work, Psychology, Child Life, Music Therapy, Chaplaincy, Palliative Care and Financial Counseling.
Erin Perez, Thrive program manager, has helped connect Cheyanna and Justin to several resources throughout their son’s health journey at Children’s Mercy. Thrive first came to the rescue for Cheyanna and Justin soon after Holden’s first surgery. Erin met with Justin and listed several program options Thrive makes available to families and asked which one would help their family the most. Justin said all of them. Erin’s response? “We can do that.”
Recently, Erin helped Cheyanna find a mentor through the Parent to Parent program. “Through the mentor program, I have actually connected with someone. Her son is 5 and she’s already been through what I’m going through right now. Having somebody really helps,” Cheyanna says.
The Thrive program also assists families in financial need. Traveling back and forth to appointments, particularly for families coming in town from other areas in the region, means time away from work and accumulating expenses for overnight stays and gas. Staff members also help families apply for grants to cover the cost of mortgages, car payments and other expenses which can feel overwhelming when facing the costs of cardiac care.
Cheyanna and Justin both describe Thrive as providing the support they need as they’ve taken this health care journey with their son. “It’s more than just your baby going to have open-heart surgery. It’s life changing. When it comes to the Thrive program, it’s been a lifesaver,” Cheyanna says.
Learn more about the Thrive Program at Children’s Mercy.