The Story of The Hummingbird
Our Program cares for children with serious health problems that can’t be cured. Our team offers palliative and supportive care that fits each family’s needs.
The hummingbird is one of life’s tiny miracles, just like our patients.
A hummingbird’s heart beats faster than any other bird. Its wings fly in the shape of a figure eight, the symbol of infinity. Hummingbirds are magical, mystical, and make our world a more beautiful place.
In Native American traditions, the hummingbird represents a messenger between worlds. They keep the balance between nature and spirit. This creature opens the heart and teaches others to appreciate the magic of life. We learn the same lessons from the patients we care for.
Palliative care for seriously ill children
Children who have serious, life-threatening health problems need physical, emotional and social care. We offer palliative care to ease pain, symptoms and improve quality of life for our patients.
The Hummingbird Program offers support for children, families and the people who care for them. Our team helps to ease your child’s pain and stress. We take time to get to know your family and learn about your goals for your child. We work with you, and your child’s whole care team, to help build a care plan that works for your family.
What We Do
- Visit your child in the hospital and clinic
- Help ease pain, nausea, fatigue, shortness of breath, anxiety, constipation and other symptoms
- Provide psychological, emotional, and social support for your child and family
- Improve your child’s quality of life
- Coordinate your child’s care across different settings
- Organize family or care team meetings to discuss complex choices for complex health issues
- Work with your family to clarify care goals based on what matters most to you and your child
- Share information about home services (such as home nursing care and hospice care)
Other Services
- Coordinate hospice care, if needed
- Offer grief support through all aspects of chronic illness, death and ongoing bereavement
- Educate staff who care for children with serious health conditions
- Provide psychological support to people who work with children with serious medical issues
Help for Expectant Parents
Waiting for your baby to be born can be stressful for any parent. It’s especially hard when you learn that your child will be born with a serious health problem. The Hummingbird team works with the Penn State Perinatal Program to help you cope and prepare.
We Can Help You
- Strengthen your support system and coping skills
- Think through the information you have about your baby’s condition
- Create a birth plan focused on the things that matter most to you at this emotional time
- Make decisions that honor your goals and values
- Build memories and a legacy with your baby
Care and Treatment
Patient Care and Treatment
The Hummingbird Program cares for infants through teenagers
The Hummingbird team helps children with serious, life-limiting health problems. We work with children from infancy through the teen years. We offer palliative care so you, your child and your family can have a better quality of life.
Here are some of the health problems that our patients have:
- Premature babies with many serious health problems
- Many types of cancers
- Serious genetic disorders
- Progressive neuromuscular disorders
- Serious metabolic disorders, such as Krabbe, Hurler’s, Neimann-Pick and Sanfilippo
- Severe brain problems, such as hydranencephaly and holoprosencephaly
- Severe forms of epidermolysis bullosa
- Serious heart conditions, including single ventricle heart problems with a complicated medical course
- Severe pulmonary hypertension
- Severe lung problems, such as cystic fibrosis with a complicated medical course
This is not a full list of the health problems we see. If your child has a serious health problem that’s not listed, please call us to see how we might help.
Locations
The Hummingbird Program care team at Penn State Health Children’s Hospital offers palliative care in the hospital, outpatient clinic and hematology/oncology clinic.
The Hummingbird Program works with your child’s care team to provide palliative and supportive care. We want to help improve the quality of life for your child and your family. Our care team sees patients in the hospital, as well as the outpatient and infusion clinics listed below.
Locations
Care Team
Nicole Hahnlen, RN
Nurse Coordinator
Elaine Potts, LCSW
Clinical Counselor
Resources
Patient Education
The death of a child is devastating, and the grief journey for bereaved parents is long and many times lonely. The Hummingbird Program provides grief and bereavement support to parents and families in various settings. We offer:
- Support groups twice per year (spring and fall)
- Special one-night workshops on different topics, such as Preparing for the Holiday Season (early November)
- Individual, couple and family sessions
Other grief and loss resources
Support groups
- Pathway’s Center for Grief and Loss
Monthly drop-in groups for parents, as well as general loss of a loved one
Call 717-391-2413 - Grief Share
A Christian-based support group with many locations throughout PA
Call 800-395-5755 - Compassionate Friends
A self-help group of bereaved parents with many local chapters. This group is for families who have lost a child at any age, from any cause
Call 630-990-0010 - Share of Lancaster
Support for perinatal loss
Call 717-533-7857 - Common Bond Ministry Grief Support Group
For mothers who have lost a child. Small group setting and prayer support - Sweet Grace Ministries
Support group for parent who experienced a loss of their child through ectopic pregnancy, miscarriage, stillbirth or neonatal death.
Support programs for children
- Camp Dragonfly (Central PA), 717-732-1000
- Camp Koala (Danville, Carlisle, PA), 717-258-1122
- Drew's Hope (Shippensburg and Greencastle, PA), 717-532-8922
- Pathway’s Center for Grief and Loss (Lancaster area), 717-391-2413
- Olivia’s House (York and Gettysburg area), 717-699-1133
- Highmark Caring Place (Harrisburg area), 717-302-8411
- The Healing Patch (Altoona area), 800-445-6262
- Tides (State College area), 814-692-2233
Find more information about grief and loss.
Other resources
For Referring Providers
Who we serve
The Hummingbird Program provides palliative care to children with serious, life-limiting conditions, from the perinatal period through adolescence.
Examples
- Progressive, metastatic cancer or cancer with a known poor prognosis
- Extreme prematurity with multiple major medical problems
- Chromosomal disorders with known poor prognosis
- Progressive neuromuscular disorders
- Severe metabolic disorders, such as Krabbe, Hurler’s, Neimann-Pick and Sanfilippo
- Brain reduction syndromes, such as hydranencephaly, holoprosencephaly
- Severe forms of epidermolysis bullosa
- Single ventricle cardiac physiology with multiple medical complications
- Severe cardiomyopathy
- Severe pulmonary hypertension
- Cystic fibrosis with recurrent hospitalizations and consideration of lung transplant
Services
- Hospital and outpatient consultation for pain and symptom management and follow up
- Psychological, emotional, and social support for children and families facing serious illness
- Care coordination across settings to streamline care for families and medical providers
- Facilitating family or health care team meetings involving complex medical decision-making
- Help with clarifying goals of care
- Advance care planning (i.e., code status, POLST)
- Help with difficult medical decisions and creating a care plan that is consistent with treatment goals
- Hospice care referral and end-of-life medical management
- Grief support through all aspects of complex or chronic illness, death and ongoing bereavement
- Education for families and health care providers
- Debriefing and support for health care providers
Service Availability
Inpatient and outpatient consultation and follow-up: Monday–Friday, 8 a.m. – 5 p.m.
What happens when you refer a patient?
- The Hummingbird team schedules an appointment with the patient and family.
- The team meets with the child and family to learn more about the medical condition. We work to understand the child and family’s concerns, and the goals and priorities that are most important to them. We will assess symptoms and suggest symptom management where needed.
- We tailor ongoing support to meet the unique needs, goals and wishes of each child and family.
- Our team serves in a consultation capacity, providing assistance and recommendations to the patient’s primary care physician and other medical providers.
Professional Education
Pediatric palliative care education
The Hummingbird Program educates health care professionals about pediatric palliative care. Previous and ongoing education opportunities include:
- Pediatric End-of-Life Nursing Education Consortium (ELNEC) Course
- Education updates for all pediatric nursing units and pediatric residents
- Quarterly interdisciplinary conferences
- Lectures to local APHON and HPNA Chapters
- Lectures to community health, hospice, and home care providers
- Participation in the Pediatric Palliative Care Coalition
- Observational experiences for nursing students and residents
Support Groups
Support groups provide children and their families an opportunity to connect with others in similar situations. Learn more about the support groups offered at Penn State Health Children’s Hospital.