Pediatric Palliative Care: An Anchor in the Storm

Pediatric Palliative Care: An Anchor in the Storm

When an infant is born with a complex congenital condition or a child receives an unexpected diagnosis of cancer or other serious illness, the whole family is thrust into stormy waters. Parents often feel powerless, unable to understand what their child’s future—and their own—may hold. Access to home-based palliative care services, like those offered by Coastal Kids Home Care, can provide the anchor that a child and their whole family need to weather the storm ahead.

WHAT IS PEDIATRIC PALLIATIVE CARE?

Pediatric palliative care is not just ordinary medical care—it is extraordinary and specialized support for children grappling with acute, serious illnesses and life-limiting diagnoses. Palliative care works in tandem with traditional medical care, offering additional support to families.

Beyond the management of physical pain and symptoms resulting from illness, home-based palliative care encompasses the emotional well-being of both child and family. It acts as a guide, empowering patients and their caregivers to confront the daily trials of living with a serious illness. It is a lifeline that can be grasped at any stage of a child's illness, extending its comforting embrace until the very end.

Pediatric palliative care was life-changing for the family of Claire Watson, who was diagnosed with Mucolipidosis type II (also known as I-cell disease) at just five months old. For Claire’s family, access to shift nursing for their fragile daughter opened her world, and theirs. She also delighted in specialized music therapy, which brought out her inner rock star. Access to anticipatory grief counseling helped Claire’s siblings to better understand her prognosis too.

Connecting with Coastal Kids made all the difference for the Watsons—from the age of 11 until the end of her life at 13, Claire found new joy, and her family found stability.

“The compassion and empathy that her music therapist showed for Claire was overwhelming, he didn’t see Claire for her diagnoses, her palliative status, or limited abilities,” said Suzi, Claire’s mom. “He saw Claire for the music she loved to hear and perform.”

Claire’s music therapist played her favorite song, “Let It Go,” at her memorial service, a moment her parents will always treasure.

PIONEERS IN HOME-BASED CARE

Since 2005, Coastal Kids has been a guiding light, providing in-home nursing and comfort care for children with serious illnesses. Over the years, hundreds

of families have been embraced by the comprehensive pediatric palliative care services provided by Coastal Kids—all in the familiarity of home. No stone is left unturned when it comes to guiding a family through their child's illness.

Coastal Kids' comprehensive approach coordinates with physicians from pediatric specialty hospitals to ensure continuity of care from hospital to home.

Once a child is home, clinicians regularly assess and manage the comfort of the child and address the needs of the whole family:

• Pediatric Nurses are available

• 24/7 to provide expert pain and symptom management for children and care coordination with pediatric specialty hospitals

• Expressive Therapists help pediatric patients share their emotions through art, music and child life therapy or assist in relieving symptoms through massage

• Medical Social Workers offer practical and financial assistance and provide anticipatory grief and bereavement counseling to patients, siblings, and caregivers

• Shift nursing ensures quality medical care for children with round-the-clock medical needs and brings peace of mind to parents.

When curative treatments reach their limits, Coastal Kids' palliative care team seamlessly transitions to end-of-life care, ensuring the child and their family continue to receive unwavering support without interruption. When six-year-old Maddie's cancer became terminal, her family was grateful to have her home to live her last weeks surrounded by love and to pass away peacefully in her parents’ arms. With hearts filled with compassion, the pediatric palliative care team offers in-home care for children like Claire and Maddie and extends ongoing emotional support to their families. Coastal Kids Home Care offers families solace, support, and a steady anchor in the storm.

Learn more at coastalkidshomecare.org