Lighting the way for children with medical complexity
The PPCC Firefly Chat is a series of interactive virtual discussions with parents and professionals - FREE of charge - that explore issues facing the pediatric palliative and hospice care community.
Upcoming Firefly Chat: August 28th
Registration opens August 1st.
Firefly Chats are free, but registration is required.
To help "light the way" for families, caregivers and care providers, consider a donation to PPCC to help fund the Firefly Chat Series. Donate HERE.
Caring for children with medical complexity can start at birth, sometimes even prior. Join our panelists as they highlight how perinatal palliative care can be the beginning layer of support for families as they navigate their child’s medical journey. Our panel will share their experiences in perinatal palliative care and offer insight and practical suggestions for creating an atmosphere of open communication and honest discussions to develop individualized care plans, based on their unique perspectives and experiences. During this Firefly Chat, our moderator and panelists will discuss:
1) The importance and benefits of perinatal palliative care
2) How to have conversations about goals of care for a child born with medical complexity
3) What to expect from a perinatal palliative care team and examples of how parents and a care team can partner successfully
Presenters:
Parent Presenters: Betsy Shields and Justin Walls, parents of Liam and Levi
Betsy and Justin are parents to 3-year old Liam and Levi (5/8/21-5/11/21). Betsy has worked as a NICU nurse for 17 years, and Justin works as a business analyst. Betsy and Justin’s journey started in January 2021 - they became engaged, found out they were expecting twins, and gave birth to baby boys, Liam and Levi, at 23 weeks. Sadly, the family said goodbye to dear Levi just 3 days later due to complications from his premature birth.
The family's journey continued for Liam. He had a 4-month NICU stay going between UPMC Magee-Womens Hospital and UPMC Children's Hospital of Pittsburgh, multiple surgeries and a homecoming 4 months later in September. Today, Betsy and Justin continue to navigate the feelings of loss for Levi, work tirelessly with Liam’s multiple therapies, and are intentional about enjoying every milestone Liam accomplishes.
Katherine Ramey, MSN, CRNP, NPP-BC, is a neonatal nurse practitioner and perinatal palliative care nurse practitioner in the Division of Palliative Medicine and Supportive Care at UPMC Children’s Hospital of Pittsburgh. She graduated from the University of Pittsburgh School of Nursing in 2010 and worked as a bedside nurse until 2017, when she graduated from the University of Pittsburgh School of Nursing as a neonatal nurse practitioner. She completed a year-long fellowship in pediatric palliative care at UPMC Children’s Hospital of Pittsburgh in June 2021, after which she became actively involved in the development of the perinatal palliative care program at UPMC Magee-Womens Hospital.
Moderator:
Dana Dombrowski, MSW, LSW - Social Worker and Psychosocial Program Coordinator at The Children’s Hospital of Philadelphia
Dana Dombrowski graduated from the University of Connecticut in 2003 with a BS in Family Development and a minor in Sociology. She went on to attend graduate school at the University of Pennsylvania where she received her Master’s degree in Social Work in 2005. Upon completion of this program, she obtained her LSW and was hired by The Children’s Hospital of Philadelphia as a Pediatric Oncology Social Worker. She worked in that position specializing in patients with a terminal cancer diagnosis, grief and loss for over 8 years. In 2013, Dana joined CHOP’s palliative care team (PACT Team) as a social worker and the psychosocial program coordinator.
Join our panelists as they highlight how perinatal palliative care can be the beginning layer of support for families as they navigate their child’s medical journey. Our panel will share their experiences in perinatal palliative care and offer insight and practical suggestions for creating an atmosphere of open communication and honest discussions to develop individualized care plans.
A board certified chaplain, licensed social worker and bereaved parents dialogue about the importance of addressing spirituality at end of life. This Firefly Chat focuses on the importance of offering spiritual support to all individuals and those who identify as “not religious".
Learn more about the Collaborative Filmmaking Project and how 5 families shared their grief and bereavement experiences in their own unique ways.
Each of 5 participants created a short film that celebrated the legacy of their child and explored a range of key topics related to their grief journey and experience navigating palliative care for their child. The films illustrate various elements of the grief journey, which are unique for each family.
Making arrangements at the end of a child's life is something that is approached differently by every family and caregiver. Our host and panelists share their experience talking with different families, illuminating the incredibly diverse ways in which people plan, prepare for, and memorialize when a child's death occurs.
Joy isn’t the first word that most people associate with pediatric palliative care, but it is a powerful part of the experience for many families. We hear from parents and caregivers as they explain how they identified, captured, and experienced joy as a part of their child’s medical journey.
Caring for a child with medical complexities can be stressful, overwhelming and challenging. While traditional medicines are often the first-line of treatment, the use of alternative therapies and supports are becoming more readily available. Listen to a Recreation Therapist and a Massage Therapist who help care for children with medical complexities both in the hospital and home setting.
Palliative care and end-of-life care for children focuses on the whole family including siblings. Parents and medical professionals often worry that siblings “get lost” during the illness. Hear a palliative care provider and a bereaved sibling explore how the death of his brother affected him and his family.
Children with medical complexities frequently see multiple specialists and are sometimes traveling to more than one hospital or medical center for care. Families are tasked not only with sharing their stories over and over, but also trying to remember critical health data points, medication names and doses in addition to important contacts in their child’s care. This chat highlights strategies for organizing medical data.
For many who are grieving the loss of a child, celebrating the holidays can be even more challenging and stressful. As with the grief journey, what one person finds comforting may not work for all. In this Firefly Chat we talk with a family about their experience honoring their child who passed, navigating their grief and managing the “expectations” over the seasons.
Presentation Materials
Presentation Materials
Mindfulness/Gratitude Practices
What is it really like caring for a medically complex child in your home? Learn directly from the parents living the experience how to best support and help families in this very unique situation.
PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization. Donations are tax-deductible according to the IRS’s rules and regulations. The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.
