At OHSU Doernbecher Children’s Hospital, we support your whole family during your child’s care for a heart condition. Our pediatric heart team offers a range of services to help you focus on your child.
- Support groups and mentors for families of children with a heart condition.
- Child life specialists and trained therapy animals to support your child’s well-being in the hospital.
- Social workers to connect you with hospital and community resources.
- Palliative care for comfort and support during difficult times.
- A Cardiac Parent Advisory Council to shape the care of children in our program.
OHSU and Doernbecher services
Support group: Heart to Heart Family Connections meets monthly on Zoom, giving families and caregivers of children with heart conditions a place to meet and share stories. Two nurses and a social worker coordinate the meetings.
- When: 6:30 p.m. on the first Thursday of each month.
- RSVP: Please email Kristine Gutshall, RN, at firstname.lastname@example.org to RSVP and receive the Zoom link.
Parent mentors: When your child is diagnosed with a serious heart condition, we can connect you with parents who have gone through similar experiences. Mentors are available to talk with you and offer support throughout your child’s care.
Transitioning to adult care: When it’s time, patients with congenital heart defects will work with their care team to transition to our adult program.
Pediatric heart registries: We invite families to participate in national and international registries. By agreeing to share information about your child’s heart condition and outcomes, you can help scientists discover patterns and improve care. Participants also receive updates on the latest findings. Participation is completely voluntary.
Healthy Heart Family Tree assessment tool: The Knight Cardiovascular Institute offers a free online survey where you and family members can check your risk of cardiovascular disease.
Doernbecher amenities: We strive to make your stay as comfortable as possible, with offerings that include:
- Family lounges
- Indoor and outdoor play spaces
- Meditation rooms
- A resource center in the lobby with books, copy machines, computers, activities and information for families
- Convenient places to get food or coffee, including a lobby-level Starbucks
Rood Family Pavilion: Families from outside the Portland metro area are eligible to stay in OHSU’s guest house free of charge (space permitting). The Rood Family Pavilion has a floor dedicated to families with a child being treated at Doernbecher. Families stay in private suites and have access to shared spaces to cook, play and relax.
Child life specialists: Our certified child life specialists are here to support all the children in your family, not just patients. They help lower anxiety and explain what’s happening. They also encourage children to express their feelings through creativity and play.
Palliative care: This service is available to any family of a child with a serious illness. Our Bridges Pediatric Palliative Care team offers comfort and information at all stages of your child’s care. The team:
- Supports you through difficult decisions, tests and treatments.
- Makes sure that everyone on your child’s care team is aware of your hopes and goals for your child.
- Helps with pain and symptoms, counseling, education, bereavement, and religious, spiritual or cultural services.
Social workers: Our licensed clinical social workers provide emotional and social support. They can connect you with financial resources, transportation, housing and other services in your community.
Animal-assisted therapy: Hope and Davis, our specially trained therapy dogs, promote healing in the hospital. Volunteers also bring therapy-certified dogs and cats to visit children and families in their rooms and in our waiting areas.
Hospital school program: Our education program can keep school-age kids learning and connected to their teacher and classmates during their hospital stay.
The following local and national groups offer support, information and connections with other parents who may share your experience:
- American Heart Association for Oregon and southwest Washington
- Mended Little Hearts: Peer support for families of children with congenital heart disease
- Kids with Heart National Association for Children’s Heart Disorders: Volunteer group that matches parents with other parents of children with similar heart conditions, local support groups and online support
- I Heart Change: Website for young people with congenital heart disease who are moving to adult care
- How the Heart Works, National Heart, Lung, and Blood Institute
- Heart, HealthyChildren.org, American Academy of Pediatrics
- Heart Health Topics, American Heart Association
- Information for Patients and Families, Congenital Heart Public Health Consortium, American Academy of Pediatrics
- Challenges Faced by Parents of Children with Congenital Heart Disease, HealthyChildren.org, American Academy of Pediatrics
- Kids with Heart, National Association for Children’s Heart Disorders
- Pediatric Heart Network, a National Heart, Lung, and Blood Institute site with information about research and studies
- The Children’s Heart Foundation
- Heart Disease: Reduce Your Child's Risk, HealthyChildren.org, American Academy of Pediatrics
- Common Heart Conditions in Children, SecondsCount, the Society for Cardiovascular Angiography and Interventions
- About Myocarditis, Myocarditis Foundation
- Kawasaki Disease, U.S. National Library of Medicine
- Pediatric Cardiomyopathy, National Organization for Rare Disorders
- Pediatric Cardiomyopathies, American Heart Association
- Children’s Cardiomyopathy Foundation
- Neonatal Lupus, National Organization for Rare Disorders
- Children and Arrhythmia, American Heart Association
- Arrhythmia, National Heart, Lung, and Blood Institute
- Patient Resources, PACES (Pediatric & Congenital Electrophysiology Society)
- SADS Foundation
- Wolff-Parkinson-White syndrome, U.S. National Library of Medicine
Congenital (present at birth) heart conditions:
- Healing a broken heart: The emotional toll of living with a congenital heart defect; an interview with Knight Cardiovascular Institute psychologist Adrienne Kovacs, Ph.D.
- Congenital Heart Defects, National Heart, Lung, and Blood Institute
- Congenital Heart Defects, Centers for Disease Control and Prevention
- Congenital Heart Disease, SecondsCount, Society for Cardiovascular Angiography and Interventions
- Congenital Heart Defects, American Heart Association
Genetic syndromes that affect the heart:
- Alagille syndrome, U.S. National Library of Medicine
- CHARGE Syndrome, National Organization for Rare Disorders
- Cornelia de Lange Syndrome, National Organization for Rare Disorders
- Down syndrome (Trisomy 21), U.S. National Library of Medicine
- Ellis Van Creveld Syndrome, National Organization for Rare Disorders
- Holt-Oram syndrome, Genetic and Rare Diseases Information Center
- Kabuki Syndrome, National Organization for Rare Disorders
- Loeys-Dietz syndrome, U.S. National Library of Medicine
- Marfan syndrome, U.S. National Library of Medicine
- Noonan Syndrome, National Organization for Rare Disorders
- Turner syndrome, U.S. National Library of Medicine
- 22q.11.2 deletion syndrome, U.S. National Library of Medicine
- VACTERL Association, National Organization for Rare Disorders
- Williams syndrome, U.S. National Library of Medicine
- Wolf-Hirschhorn Syndrome, National Organization for Rare Disorders
- Heart Surgery Guide, Doernbecher Children’s Hospital
- “Mended Little HeartGuide; A Parent and Caregiver Resource Guide for Families Living with Congenital Heart Disease,” Mended Hearts, a national nonprofit
- Web Booklet: If Your Child Has a Congenital Defect; Our Guide for Parents, American Heart Association
Call 503-346-0640 to:
- Request an appointment.
- Seek a second opinion.
- Ask questions.
See how Davis, one of Doernbecher’s therapy dogs, cheers up patients. Doernbecher is the only children’s hospital in the Northwest with two facility dogs, Davis and Hope, along with volunteer animal-assisted therapy teams.
‘Providing hope and comfort’
See how child life specialist Jan Crider eases families’ anxiety and makes Doernbecher fun for young patients and their siblings. Learn more about our Child Life Program.