Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
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Monroe Carell Jr.
Children's Hospital
at Vanderbilt
2200 Children's Way
Nashville, TN 37232


(615) 936-1000

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Special Events

 

Sickle Cell Family Retreat

During the first weekend in May, we host a retreat for our families with sickle cell disease at The Center for Courageous Kids, a $20 million state-of-the-art medical camping facility where children battling illnesses can attend free of charge. The campus is on 168 acres in the rolling hills of Scottsville, Kentucky. It includes an on-site medical center with helipad, indoor aquatic complex, equestrian riding arena, bowling alley, gymnasium, climbing wall, boating, fishing, and theater.

2015 Sickle Cell Disease Day on the Hill

Day on the Hill was a legislative event that brought together Representatives and Senators of the Tennessee General Assembly, individuals who have and are affected by sickle cell disease, and other sickle cell disease stakeholders. The purpose was to lobby for legislation that would improve the lives and quality of care for individuals with sickle cell disease.

Vanderbilt University Medical Center and Children’s Hospital, St. Jude Children’s Research Hospital, Sickle Cell Foundation of Tennessee, Erlanger Health System, and the Chattanooga Scenic City Sickle Cell Corporation were some of the key organizations that lead this state-wide effort.

Families and other attendees were provided with Day on the Hill Toolkits, one-page fact sheets, and sickle cell-shaped cookies to provide legislators. They attended a training session with an esteemed lobbyist to learn how to effectively communicate with legislators.

Bill HB0733/SB1074, primarily sponsored by Representative Harrison Love, was successfully signed into legislation on April 10, 2015 and went into effect in 2016. As enacted, this bill will authorize TennCare to provide medical assistance for sickle cell disease management services and public education campaign activities.

Work in sub-Saharan Africa

Sickle cell disease (SCD) is a public health disease in sub-Saharan Africa. Nearly 30 percent of Ghanaians have sickle cell trait, a benign condition, and about 2z percent of babies are born with SCD every year. In the past most of those affected died in childhood. Recent advances in health care have resulted in children with SCD now living to  reproductive age.

Pregnant women with SCD are at increased risk for both pregnancy- related and SCD- related morbidity and mortality. At Korle Bu Teaching Hospital, in Accra, Ghana, approximately 6 percent of pregnant women die during pregnancy.

Modifiable risk factors associated with increased death rate in pregnant women with SCD and their offspring are not well understood. With funds from the Aaron Ardoin-Hill Foundation, we have been able to employ a nurse coordinator located at KBTH who is dedicated to implementing and following evidence-based guidelines for pregnant women with sickle cell disease. We are optimistic that we will drop the expected rate of maternal mortality from 6 percent to zero.


April0 2014

Dr. DeBaun and Angela Ebosole, 18 and a senior at Franklin High School in Franklin, Tennessee, attended a U.S. Congressional Briefing on April 9, 2014 titled: Sickle Cell Disease & the Lung: Advances & New Directions, in cooperation with Senator Chris Coons (D-DE). Angela Ebosole's talk was titled "Sickle Cell Disease and Asthma: A Patient's Perspective." Dr. DeBaun discussed the topic, "Airway Obstruction and Acute Chest Syndrome in Children with Sickle Cell Disease."

Angela has sickle cell disease and asthma. She is a member of the National Honor Society who hopes to become a pediatric hematologist and help with sickle cell disease research.

Angela


Last Edited: December 2, 2016
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