Pediatric Heart Care: Resources for Patients and Families

Cardiology nurse Amy Brown with a parent
Cardiology nurse Amy Brown (left) helps guide patients and their families to Doernbecher’s many support services and resources.

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.

We provide:

  • 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

Kristine Gutshall, RN, a healthcare provider at Doernbecher Children's Hospital
Kristine Gutshall, RN, helps run our support group.

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 gutshall@ohsu.edu 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
Doernbecher family at the Rood Pavilion
A family checks out a suite at the Rood Family Pavilion.

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.
Doernbecher therapy dogs Hope and Davis
Davis (left) and Hope are specially trained to comfort Doernbecher patients.

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.

Parent and a baby in a Doernbecher waiting room
Doernbecher’s family lounges and play spaces are designed to keep you and your family comfortable during your time at the hospital.

Community support

The following local and national groups offer support, information and connections with other parents who may share your experience:

Information

General

Condition-specific information

Acquired conditions:

Arrhythmias:

Congenital (present at birth) heart conditions:

Genetic syndromes that affect the heart:

Pulmonary hypertension:

For families

Call 503-346-0640 to:

  • Request an appointment.
  • Seek a second opinion.
  • Ask questions.

Locations

Parking is free for patients and their visitors.

Doernbecher Children’s Hospital
700 S.W. Campus Drive
Portland, OR 97239
Map and directions

Find other locations across Oregon and in southwest Washington.

Refer a patient

Healing paws

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.