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Integrated Care Help Family Manage Son’s Sickle Cell
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"I have known Patrick and his family since he was born," says Teresa York, MD, Division Head and Clinic Director of Pediatric Hematology/Oncology at UMCH. "I have watched him face each challenge with courage, and his parents are very involved with his care."
For his entire life, Patrick has been living with sickle cell disease. The condition, in which his red blood cells are shaped long and curved like sickles, was diagnosed right after he was born. Their unusual shape sometimes prevents his blood cells from moving well through his smallest arteries and veins. This means blood cells can build up in places where they shouldn't, causing pain in any area of the body – a situation known as a sickle cell crisis. Besides pain, having sickle-shaped cells can cause organ damage, anemia and other health problems.
In most cases, there is currently no cure for sickle cell disease. However, it can be treated with medication, drinking plenty of water and regular blood transfusions. Around the time of his first birthday, Patrick started receiving monthly blood transfusions at the University of Maryland Children's Hospital (UMCH). The daylong treatments that transfusions require may sound tedious, but families and the UMCH team work together to keep kids amused through games, coloring books and other activities. Many of the kids watch movies and – this being the 21st century and all – play video games on their tablets.
Despite excellent treatment, sickle cell disease is a challenging condition. When Patrick was 3, an ultrasound showed that the build-up of sickle cells had caused his spleen to harden, and he had to have it removed. Then, when he was 7, Patrick had a minor stroke, common in patients with sickle cell disease. He recovered well from both of these set-backs. "He has been doing pretty fine since," says his father, Richard.
"At UMCH, we take as many measures as possible to keep our pediatric patients out of sickle-cell crisis or else minimize their symptoms," says Dr. York. "We constantly monitor them for any organ damage that this condition can cause so we can intervene quickly."
"Dr. York is amazing. I love her, and I'd recommend her to anyone," says Richard.
"And I have!" his mother, Paulette, pipes in.
"Between the service and caring for the kids, UMCH is the total package," adds his dad.
"All the nurses know Patrick," boasts his mom. "He's a ladies' man."
One day, Patrick might just wow the women with his uniform because he aspires to be a soldier or a policeman.
"Patrick and his parents are an amazing team," continues Dr. York. "They have taught me so much about taking care of a child with a chronic illness."