Robyn and Kevin Kinebrew’s journey with chronic illness began when they received a call that their 33-week twins, hospitalized in the neonatal intensive care unit, had sickle cell disease. They discuss how they navigated and helped their sons prepare for the transition to adult care.

Video Transcript:

Mr. Kinebrew: As healthcare professionals pediatricians play a role in partnering with families to navigate the health care system. Cameron’s first crisis occurred when he was nine years old. He had an infection which caused a fever, bad headaches and some stiffness in his neck which led to a spinal tap. After a week he was discharged but eventually his headaches resurfaced along with back spasms which lasted for months. So, by Christmas Eve Cameron was in so much pain he couldn’t walk. We were readmitted into the hospital the hospital did a scan which revealed he had a large bone infarct in his leg. The hematologist concluded he was and had been having a pain crisis during this time which caused these symptoms. We spent about a month in the hospital treating his pain and other complications that developed. So, it was during this time that we began to find our voice to advocate for our sons and how to effectively interact with the medical team.

Mrs. Kinebrew: One small example of this, is that they are both allergic to chlorhexidine which causes them to have a bad rash. They are the first to make sure the nurses know and they double check before they put anything on their skin. They’ve learned from experience just to use good old-fashioned alcohol.

Remember as you interact with patients and their families it is truly a moment of truth. It’s a moment of truth for everyone involved. These encounters will either be positive or negative it can affect us it can affect our children’s care it will affect our children’s outcomes.

Please tell your patients and families that it’s okay to admit that you need help. Encourage them to take advantage of all the resources that are available.

I think for working with parents of chronic disease I think you really have to connect with the patient but also with the family. But make sure the family connects with the physician and the healthcare facility where they get their care.

…to encourage students that I work with and all the staff to continue to listen to families. I cringe when I hear parents say that professionals don’t listen to them.

With time with patience we can really make a difference in these families’ lives.