Support services at the hospital and after you go home
Our goal is to assist families in making their heart condition fit into their normal daily lives. We provide support and help with adjustment to life in the hospital through various supports, such as psychology, child life, and music therapy. Once families leave the hospital, we want to ensure that they continue to feel supported in living normal, fulfilling lives. We can provide support during clinic visits, or meet with children outside of normal clinic visits if needed. We are also happy to collaborate with schools and outside care providers, like counselors and speech/occupational/physical therapists, to ensure that children are thriving at home, school, and with friends.
The Thrive team will connect you with a wide range of resources that Children’s Mercy offers to families. Here are some of the ways we can help.
Advice and support from parents who have been there
The Parents Offering Parent Support (POPS) program pairs you with a volunteer parent mentor who has been through a similar situation with their child. Your mentor parent can share their experiences and help you with all kinds of questions. Whether you’re struggling with a long hospital stay or wondering about readjusting to life back home, they can listen and offer support. We can also help siblings understand and cope with a diagnosis. Please contact us at (816) 302-8229 or firstname.lastname@example.org.
Cardiac Neurodevelopmental Program
The Thrive Program collaborates extensively with the Cardiac Neurodevelopmental Program (CND) to provide consistency of care and ensure families have the resources and support they need. The Thrive Program can refer your child to CND when neurodevelopmental concerns are present, and provide education and support to families related to developmental and learning concerns in our pediatric heart patients. The Thrive Program also attends the monthly CND team meetings to discuss patient and family needs, and assist in ensuring that families have the resources necessary to manage CND concerns.
Some of the Heart Center families have found these resources to be helpful.
Help when you’re home
Leaving the hospital can be both a relief and a challenge at the same time. The Thrive team is always available to help you prepare for discharge, answer questions as they arise, and guide you during a crisis situation.
We can also assist with your child’s transition back to school and other daily activities, including educating school staff and peers in age-appropriate ways if desired.
Transition to adult care providers
We begin working with your child early in the teenage years on helping them understand their medical condition, advocate for themselves, and manage their medications and appointments. Then, when they’re ready to transition to an adult provider, we’ll help them find a care team who understands their medical history and can continue to give them the quality care they need.
Honoring your journey through the Heart Beads Program
Through the Heart Beads Program, children and families can use colorful beads as symbols to share their unique experience at Children’s Mercy.
Parent Guides: resources to help you prepare for your child's heart journey
Children's Mercy has worked closely with the National Pediatric Cardiology Quality Improvment Collaborative and families to provide support and resources throughout your child's heart journey. We've created various resources related to congenital heart defects and hypoplastic left heart syndrome (HLHS). We encourage you to look through these, share and discuss with your care providers.