Lighting the way for children with medical complexity
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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: Wed, December 11, Noon-1 PM ET
My Child with Medical Complexity is Turning 18, Now What? Guardianship and More
Click HERE to register. 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.
When a child with medical complexity becomes an adult, there are new and complicated systems to navigate. In this Firefly Chat, PPCC moderator, Dana Dombrowski, and presenter, Jennifer Shuckrow, will highlight what her family faced during the guardianship application process and transition out of pediatric based services. In addition, they will explore decisions, sources of support/resources and identify challenges that families may face.
Learning Objectives:
1. Identify at least 3 systems that families may need to navigate when a child with medical complexity turns 18
2. Identify stressors and challenges that a families may face
3. Identify possible sources of support and resources as children with medical complexity transition into adulthood
Presenter:
Parent Presenter: Jennifer Shuckrow, Mom to Abby
Jennifer Shuckrow and her husband, Alan, are the parents of two children, Zach (24) and Abby (20). They became Abby’s legal guardians in May 2022—just a few months after her 18th birthday. Abby was diagnosed with intractable epilepsy at 3 months old and has had seizures every day of her life since. She is legally blind and profoundly delayed but remains everyone’s favorite family member. The Shuckrows are profoundly grateful that Abby has been able to attend the Western Pennsylvania School for Blind Children (WPSBC) for the past 17 years. In a previous life, Jennifer was an attorney and then a college administrator. But with Abby’s diagnosis, she shifted to the caretaking role. She serves on WPSBC’s Board of Trustees. Alan is a partner in a Pittsburgh law firm of Strassburger McKenna Gutnick & Gefsky. Zach is a graduate of the College of William & Mary; works as a patent examiner for the United States Patent & Trademark Office; and is currently applying to medical school. Jennifer and her family reside in the North Hills (Town of McCandless) and are proud Pittsburghers. Abby loves to wear her Steelers gear during games!
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.
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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.
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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.
