Helping Kids with Heart Conditions Thrive
Erin Perez, program manager, patient and family support and Thrive Program (pictured left), Jami Gross Toalson, PhD, Thrive program clinical psychologist (pictured right)
Being told your child has a heart condition can be overwhelming and difficult to understand. Navigating all the complexities that go along with the diagnosis impacts the entire family and each family member copes differently.
The Ward Family Heart Center Thrive program at Children’s Mercy was developed to help manage the needs of heart patients and provide support to families in the process.
“The goal is to provide services outside of the child’s medical needs to make sure these children are not only surviving, but thriving,” said Jami Gross Toalson, PhD, Thrive program clinical psychologist. “We meet with parents as early as possible to identify resources that can help the entire family’s emotional well-being throughout treatment.”
The Thrive Team
The Thrive team, which includes members from social work, psychology, child life, music therapy, financial counseling, chaplaincy and palliative care, meet regularly to discuss patients and identify any issues.
“There may be a family struggling with finances or a sibling that can’t be at the hospital. Maybe the family has a history of trauma we need to be aware of,” said Jami. “It’s figuring out who can work with those families to care for those specific needs.”
Each member of the team plays a vital role.
“Social work offers supportive counseling and crisis management during hospitalization and ensures families have the resources and supports they need in the hospital and within their community,” said Erin Perez, program manager, patient and family support and Thrive Program.
As a psychologist, Jami makes sure patients and parents have the interventions they need when issues are identified. “In the early years, we guide parents on how to parent a child with a heart condition. As the child gets older, we monitor for school-related issues, behavioral concerns, anxiety, depression, mood and peer-issues that come up for our kiddos.”
Child Life optimizes the patient’s development while in the hospital, no matter how long of a stay and they make sure siblings are being cared for as well.
“One of the Child Life specialists created a teddy bear with a ventricular assist device to show siblings before they walk in the room and see their brother or sister with several lines coming in-and-out of the device,” shared Jami. “That’s a huge thing to make sure siblings are comfortable, too.”
Music therapists help kids cope during hospitalization by engaging children through play and music. Playing instruments also helps improve the child’s fine motor skills.
Financial counselors work with all pre-transplant and transplant families, which can become a big burden for parents. They also help families determine qualification for Medicaid, Supplemental Security Income and other financial support available throughout the hospital.
“Our financial counselors ensure families have the resources they need even before they ask for help,” said Erin. “A lot of times parents are too proud to ask for assistance, so this just normalizes the process for them.”
Chaplaincy focuses on the spiritual and religious aspect of coping within the hospital setting, and palliative care provides continuous support to help families think about what they want for their children and their family.
Transitioning from Hospital to Home
Support doesn’t end when the child leaves the hospital. The team provides a family discharge plans to families of the most complex patients which details a list of Children’s Mercy resources and resources and supports in the family’s home town including- Early Intervention Services, Parents as Teachers, Counseling/Therapy, financial assistance programs, Imagination Library (a free book program), CHD Families Association support network, POPS (Parents Offering Parent Support) and support and guidance for siblings.
“We work so hard while kids are here to make sure surgery and recovery goes well, but for these kids and families the issues they experience are going to be lifelong,” said Jami. “We’re here to help integrate the child back into school and home life once they leave.”
Once home and settled into a routine, someone from the Thrive team follows-up with the family.
“We check to see how they're doing, how they're coping, ensure they have all the resources they need, which could be counseling resources for parents or siblings. It could be mindfulness programs, parent groups, parents as teachers, whatever it is to really ensure parents have the emotional and mental health support they need for the long-haul,” said Erin.
“They may not recognize what they need, so that’s why follow-up is so important,” Jami added. “Many families tell us they were prepared for issues related to the heart, but not the learning or behavior issues. We help families navigate all the pieces.”
Transitioning to Adult Care Providers
The Thrive team follows patients until it’s time to transition to adult care. The transition work starts during the early teenage years to help kids understand their medical condition, advocate for themselves and manage their medications and appointments.
The goal is to transition patients after being out on their own for one year.
“It’s hard to say goodbye, especially if we’ve been taking care of the child for 20 years, but it’s truly a celebration that they’re at a point in their life when they can get out in the real world,” said Jami.
Unfortunately, not every patient will transition to adult care. When a child passes away, the Thrive team is there to provide support to both families and staff.
“We make sure to reach out to families when a child passes away to offer our support,” said Jami. “We’ll also reach out intermittently to provide that resource and connection if they want it, which often times they do.”
Jami said the team also reaches out to staff members that took care of the child to make sure they’re coping as well, “Unfortunately, death happens in our world and our staff can struggle with it. We don’t want them to struggle in a way that they can't continue to do their job well.”
The support goes behind the four walls of the hospital in cases of sudden events in the community.
“We reach out to schools, daycares and other places to provide resources after a child suffers a sudden cardiac event or if there’s been a death,” said Erin. “It’s very traumatic for staff members who had to perform CPR or accompany a child to the hospital in an ambulance, and for the other children in that environment. It goes back to taking care of these kids and the people that surround them, which includes the community.”
Thanks to the Thrive program families are never alone.
“I want parents to understand just because a child has a heart condition doesn’t mean every step will be hard,” said Jami. “There are resources in place to help make dealing with a heart condition a really positive thing for families and they're not in it alone. We’re here whenever they run into road blocks.”
“We’re advocates for patients,” added Erin. “The program is like a big hug and we’re wrapping our arms around our families and walking with them through every step of the journey.”
Learn more about the Thrive Program at Children’s Mercy.