Children who battle chronic illness are "warriors," says Robyn Kinebrew, the mother of twins who have Sickle Cell Disease."They fight when they are tired, bruised, and backed up against a wall.The parents and guardians of these warriors want nothing but the best quality care for them."
She and her husband, Kevin, presented the 4th Annual Stockman Lecture at the American Academy of Pediatrics’ National Conference and Exhibition in September 2017 to share their experiences as parents of children with chronic disease.
Kevin Kinebrew explained to about 500 physicians, "You, as health care professionals, play a major role in partnering with families to navigate the health care system."
The Kinebrew’s twin sons, Kaleb and Kameron, were born prematurely and were in a neonatal intensive care unit (NICU) when their parents received their diagnosis.
"We received a phone call that our sons were diagnosed with sickle cell disease," Kevin Kinebrew said. "Our initial dreams for our sons were suddenly replaced with uncertainty and fear. However, we never lost our hope and faith. This is what has guided us throughout the last 20 years."
Families of children with chronic conditions must vigilantly understand their children’s disease, symptom triggers, and treatments, the Kinebrews explained.
"Every interaction we have with doctors, nurses, or any medical professional are teachable moments for us and our sons," Kevin Kinebrew said. "We emphasize how important it is for them to be respectful — while advocating for themselves — during trips to hospital."
Medical care providers, teachers, and others didn’t always understand their sons’ disease and accompanying symptoms, including intense pain. For example, one son was hospitalized after a winter fire drill at school. A teacher who didn’t understand his condition hurried him out the door with other students and didn’t allow him to get his coat. The cold caused a pain crisis that resulted in a four-day hospital stay.
Sometimes, Robyn Kinebrew said, physicians treat physical symptoms, but don’t understand the emotional impact of chronic disease. "The family and the patient feel overwhelmed," Robyn Kinebrew explained. "We have cried, we have prayed, we have researched — to see if there was anything we were missing. We had our ‘we can handle it’ face on, but inside we were crushed, thinking, ‘not again’ or ‘when will this end?’"
They see themselves and their sons’ medical providers as a team.
"When we question a procedure that has been recommended or have a different point of view," Kevin Kinebrew said to the physician audience, "my only request is that you seek to understand the patient’s point of view."
Robyn Kinebrew advised, "Please let your patients and families know that caring for a child with chronic illness is often a difficult journey and they will face many issues. Please tell your patients and families that ‘It’s okay to admit you need help.’"
Despite missing many days of school (34 in one year), the Kinebrew twins graduated cum laude from high school and are now third-year college students and campus leaders. Their younger brother, Kevin, 16, does not have sickle cell disease, but has felt the impact of his brothers’ illness as the whole family has dealt with their physical and emotional health.
"Our new dream for our sons — and other children with a chronic illness — is that they thrive and not just survive," she told the physicians. "Remember, as you are interacting with patients and their family, it is a moment of truth for everyone involved. Each encounter will either be positive or negative. It can affect us. It can affect our children’s care. And it will affect our children’s outcomes."
The Stockman Lecture, honoring former ABP President & CEO James A. Stockman III, MD, highlights issues regarding pediatric education and the workforce.