"These families need more comprehensive care: both while in the hospital and after they leave. That’s what this program is for."
— Jeff Darst, MD, Medical Director, Heart Institute Wellness Program
At the Children’s Hospital Colorado Heart Institute, we support patients and families in navigating and understanding their child’s medical diagnosis. We are also committed to fostering overall wellness and quality of life for infants, children, adolescents and young adults.
Team members from our Wellness Program are available to help all heart patients and families. Our collaborative team of specialists meets weekly to discuss each patient and develops a multidisciplinary approach to care that will be most successful for these families.
This hands-on approach is unique to our Heart Institute and provides our patients with more comprehensive care. This includes both inpatient care areas (like the Cardiac Intensive and Progressive Care Units) and outpatient care areas (such as the Cardiology Clinic, Pre/Post-Surgical Unit and Multidisciplinary Clinic) at the Anschutz Medical Campus.
Why we have a Heart Institute Wellness Program
The impact that heart problems can have on a child and their family may seem overwhelming. We strive to decrease the burden for families through our personalized, team-based care plans. That’s why we organized our Heart Institute Wellness Program: to focus on the strengths of families, and offer ideas and resources to help children with heart disease thrive.
How do you help families with childhood heart problems?
Because we know that most patients find comfort in having a support system, our Program provides support during times of uncertainty.
Children with a cardiac diagnosis may face unique challenges throughout their development and childhood. Our team is here to help you get through the difficult times. Despite obstacles, most families remain strong and resilient, finding healthy ways to cope and adjust to their child’s disease.
Addressing mind, body and development challenges for children with heart disease
Our multidisciplinary team is available to address the unique psychosocial and developmental challenges of growing up with a heart condition. All of our services are provided by clinical team members with specialized training and experience working with acute or chronic illness, including heart disease.
What services are available as part of the Heart Institute Wellness Program?
Our nurses and medical providers work together to support you. Building trust and alliance with families is a priority. We will do this by providing medical teaching at the developmental level of the child, coordinating complex care across several medical specialties, and advocating for holistic care that is respectful of child and family preferences.
Our social workers help families cope with the social, financial and psychological needs associated with their child’s illness. Our social workers also provide:
- Emotional support for caregivers
- Psychosocial assessment
- Support around new diagnoses and adjustment to illness
- Identification of family strengths and vulnerabilities
- Connection to financial and community resources
- Support for parenting or custody concerns
- Crisis intervention
- Pre-transplant psychosocial evaluation and support throughout the transplant process
Our child life specialists utilize therapeutic play, age-appropriate education and coping techniques to help children or teens and their families adjust and cope with the hospital or clinic setting, chronic illness and the treatments involved. Our child life services include:
- Preparation and support for procedure or surgery
- Diagnosis teaching
- Coping with hospitalization
- Medical play
- Expression of feelings
- Compliance with treatment
- Sibling support
- School re-entry program to assist with successful reintegration back into the classroom following a difficult new diagnosis, heart transplant, etc.
Our pediatric psychologists provide assessment, consultation and interventions to support overall child well-being. They address such concerns as development, behavior, emotions, and social and academic challenges. Our psychologists provide support for:
- Difficulties adjusting to chronic illness
- Emotional symptoms, such as anxiety/panic, depression or medical post-traumatic stress
- Concerns regarding development, behavior, social functioning or school performance
- Adherence to a medical regimen
- New diagnosis or changes in disease status
- Pre-transplant psychological evaluation
- Neuropsychological and neurodevelopmental assessment
- Consultation with psychiatry
- School consultation
Our chaplains provide support to children and families of all faith traditions and spiritual expressions. Chaplains are available to:
- Create and /or facilitate rituals
- Connect you with a leader from your faith tradition if desired
- Explore your sense of spiritual presence or absence
- Talk with you about the meaning of illness, explore sources of healing and hope
- Be an extra support when you feel alone, afraid or discouraged during your time at the hospital
Additional support for parents of kids with heart transplants
We offer a monthly heart transplant parent group to provide caregivers with a supportive community.
Families can connect with each other throughout the transplant process: from when they find out their child will need a transplant, to getting on the recipient list, to receiving the actual transplant and many years after. Social workers and psychologists facilitate the groups and occasionally invite speakers.
Please email HIWellness@childrenscolorado.org for additional details about the group.
Sign up for Heart Institute Wellness Program emails
We distribute information periodically to parents regarding activities or events for our heart patients and families.
Send us an email to HIWellness@childrenscolorado.org if you would like to be added to this list.