From Dr. Katie Carlberg Interim Director, Sickle Cell Program, Seattle Children’s
September is Sickle Cell Awareness Month. I’d like to share some information with you about sickle cell disease (SCD) and our efforts to help children and their families who are affected by it.
SCD is a group of blood conditions that affect hemoglobin, the part of red blood cells that delivers oxygen to cells in the body. In the United States, approximately 100,000 Americans are affected by SCD. Although most people with SCD are of African or Hispanic heritage, the disease can affect anyone, especially people of southern European, Middle Eastern or Asian Indian heritage.
During the past year, the Sickle Cell Disease Program through Seattle Children’s and Odessa Brown Children’s Clinic (OBCC) has dramatically expanded both its staff and the services it provides to nearly 150 children, teens and young adults with SCD in the Pacific Northwest. We’ve also improved the ways we deliver those services. People living with SCD have very unique and complex issues. We’re focused on making it more convenient for patients and their families to access all the services they need from a staff committed to providing compassionate, equitable care.
We recently hired six new care team members: a neuropsychologist, two nurse practitioners, a Child Life specialist, a social worker and a pediatric hematologist/ oncologist. We also installed a Transcranial Doppler (TCD) ultrasound machine at OBCC Othello so kids with SCD who need ultrasound services as a part of their routine care can get everything done in one visit instead of traveling to a separate facility.
TCD screens the blood vessels in a person’s brain for the possibility of stroke. The procedure is similar to the type of ultrasound people receive when they’re pregnant. Kids lie in a nice, semi-dark room with cool jelly on their foreheads and enjoy some screen time while an ultrasound technician takes pictures to check for markers that tell us whether or not the child is at higher risk for having a stroke.
It’s important for kids to have this screening because SCD causes red blood cells to change shape. They can get stuck in the vessels of the brain and prevent the delivery of oxygen, which can lead to stroke. About 20% of children with sickle cell disease will have a stroke, but with yearly TCD screenings, we can catch 80% of the 20% of children who would otherwise go on to have a stroke.
Dr. Sandy Rodgin is our new neuropsychologist on the sickle cell team. She conducts regular neurocognitive screenings to help recognize when a child with SCC also has cognitive issues that may impact their reasoning skills, judgement, memory and learning. She works with the child’s medical providers to develop a plan that addresses potential issues. She also puts together plans with the child’s school to ensure the child is receiving appropriate accommodations.
Our two new nurse practitioners, Angela Leo-Nkoah and Beth Willard help provide continuity of care for kids with SCD. When patients are sick enough to need to come to the emergency room or have a hospital stay, Angela and Beth have expertise in caring for patients with SCD and can meet patients and families wherever they are in the hospital to help guide their care. They also consult with a pain medicine service to ensure kids are quickly getting the medicine they need for their pain and are present at follow-up visits.
Kathryn Querin is our new Child Life specialist who works with children and families to help relieve tension, express concerns and fears, and feel more in control about their medical experience. who helps kids with SCD and their families in many different ways. You can find her helping kids who have trouble swallowing pills or are afraid of needles and need to have a blood draw. She also creates plans to help patients and their families track all of the medicine they need to take each day.
Lauren Frazier is our new social worker and is dedicated to helping patients with SCD and their families access a variety of community, social and financial resources.
Dr. Kristine Karvonen joins the team in September. She recently finished her fellowship in pediatric hematology/ oncology and has a specific interest in SCD and racial and ethnic health disparities. During her pediatric hematology/ oncology training, she also completed her master’s in epidemiology and a fellowship in child health equity research.
Looking forward, some of our next efforts will focus on bridging the gap between pediatric and adult care to make the move to adulthood as easy as possible for young people living with SCD. We’re recruiting an SCD adult provider with the goal of having patients as young as 14 years old begin meeting with the adult provider alongside their pediatric team. When it comes time to transition out of Seattle Children’s and OBCC, patients will already know their primary provider and can continue with that person in a different setting.
In addition to making care easier to access, we aim to be more flexible in the way we meet the different needs of each patient and family. We have plans to have more care providers from different specialties available during visits, such as pulmonologists, dietitians, dentists, physical therapists and others. Our vision is to offer families a list of providers they can choose to see during a visit based on their needs and priorities. We want their time with us to be meaningful and impactful.
Earlier this year, an external advisory board found that we have made brisk progress toward improving and ultimately growing the Sickle Cell Disease Program to better serve patients with SCD and their families. We are committed to growing the program into a center of excellence with additional team members, services and resources, and with a focus on actively addressing racism and bigotry that people with SCD have historically experienced within the healthcare system.
For more information about the Sickle Cell Disease Program at Seattle Children’s and OBCC, contact the program’s sickle cell nurse practitioner at 206-987-2106.
