Teen with form of sickle cell disease uses complementary care therapies at Wolfson Children’s Hospital to control pain
February 18, 2013 | Jacksonville, FL
Sandalwood High School sophomore De’Ja Pettiford, who turns 16 in February, was diagnosed at Naval Hospital Jacksonville with a form of sickle cell disease called Hemoglobin (Hb) SC disease when she was four weeks old (this test is now part of standard newborn screening tests, diagnosing sickle cell disease and other disorders much earlier).
The most serious type of sickle cell disease is Hemoglobin SS disease, in which the body makes sickle-shaped red blood cells that are stiff and sticky and tend to block blood flow in the small capillaries; this can lead to tissue death and organ damage.
“Patients with the most severe type of sickle cell disease are also at risk for a form of life-threatening pneumonia called acute chest syndrome, as well as an enlarged spleen, a higher incidence of stroke, and organ damage,” explains Nemours Children’s Clinic, Jacksonville pediatric hematologist/oncologist Cynthia Gauger, MD, who is De’Ja’s doctor.
De’Ja has a less severe type of sickle cell disease that can still be associated with severe pain and require hospitalization. Fortunately, she is not at risk for stroke or organ damage.
Although De’Ja has been closely followed for her hemoglobin SC disease all of her life at Nemours, she didn’t really start to experience problems with her condition until middle school.
Every couple of months, De’Ja experiences debilitating pain in her limbs that is so severe that she requires hospitalization at Wolfson Children’s Hospital for four to seven days at a time.
In addition to IV pain therapy, De’Ja benefits from the Integrative Care Program at Wolfson Children’s, managed by pediatric advanced practice nurse Fern Hannigan, RN, and offered at no charge to inpatients. The program offers biofeedback, hypnosis and other complementary therapies to help children distract themselves from pain and to feel more in control of their disease. Patients with sickle cell disease, cancer and other chronic conditions are able to take advantage of the program, which can be accessed by parent request or a referral from a doctor, nurse or other caregiver at Wolfson Children’s Hospital.
“People with different forms of sickle cell disease tend to require the use of IV narcotics during a crisis, but we try to help them find other ways to deal with their pain, too,” says Dr. Gauger. “Everyone deals with pain differently, so we may have to use pain medicines, but we encourage alternative therapies such as those offered by Wolfson’s Integrative Care Program. If a child can learn distraction techniques at a young age, he or she can carry those skills forth as an adult since sickle cell disease is a chronic, lifelong condition.”
De’Ja says biofeedback, hypnosis and the sound of Fern’s voice have helped her better manage her pain in the hospital. She even made a tape of “Ms. Fern” talking to her that she listens to at home when she can’t sleep due to her discomfort.
“The Integrative Care Program at Wolfson Children’s Hospital has helped me to explore other ways of managing my pain without using as many pain medications as before. I am so thankful to Fern for teaching me how to go to my ‘happy place’ and for the use of her voice when I'm home in pain,” says De’Ja.
De’Ja was last hospitalized for a pain crisis before Christmas. Despite setbacks in her health, she makes good grades, is active in her church and a popular teen who will have a Princess Party with friends for her 16th birthday this month. Throughout her life, she has been an advocate for other children with sickle cell disease, and educates schoolmates about the condition.
Her parents, Yvette Pettiford and John Brown are grateful to Wolfson Children’s Hospital for the extra-special care De’Ja receives during her frequent hospitalizations, and for the Integrative Care Program that helps their daughter to feel more in control of her disease and pain.
“The Integrative Care Program at Wolfson is awesome!” says Dr. Gauger. “With the skills De’Ja has learned, she has made an investment in the rest of her life. Hopefully, this will allow her to be more successful in her life while dealing with her pain and her disease, so she can go to college, have a fulfilling career, and do whatever she aspires to do.”