|A Cautionary Tale About Oral Contraceptives and a Blood Clot for an ACH Patient|
Angela Sanborn was a normal, healthy 15-year-old attending East Lake High School when she began experiencing pain in her groin area.
Because she worked out frequently at the gym, doctors at a local hospital thought the pain was merely a muscle strain. "But it got worse," she said. "Within a week, I went back to the hospital and they transferred me here to All Children's."
Angela became a patient in ACH's cutting-edge Pediatric Thrombosis Program, overseen by Dr. Neil Goldenberg, who also serves as Director of Research at All Children's Hospital Johns Hopkins Medicine. A battery of "CAT" scans and ultrasounds followed. And that's when it was discovered that Angela was suffering from a blood clot ("deep vein thrombosis" or "DVT") that was extensive throughout the lower venous system of her body - from the level of her ankle to above her kidneys. By now, her leg was purple and swollen and the pain was excruciating.
Yet the news that stunned the Sanborns was this: The clot was provoked by an oral contraceptive Angela had taken for six weeks, though she was more susceptible to DVT due to certain preexisting anatomical conditions she hadn't even been aware of until arriving at ACH JHM.
"I was shocked and nervous at first and was like, 'Oh my gosh, I'm going to have to get my leg amputated, or I may die,' " she recalled. "I was so nervous, and anxious to find out how I was going to recover." A first procedure was performed, but the clot returned. So a second procedure followed, involving a more aggressive approach with a few devices as well as clot-buster medicine and blood thinners, to eradicate the clot, performed by Dr. Evan Harris of All Children's and his Interventional Radiology team.
The multi-modal treatment was a success, leaving Angela pain free and elated.
"I'm so glad they transferred me to All Children's," she said. "When I got here, all the nurses were all so nice to me."
"Everyone has had such a great bedside manner," Karen added. "And Dr. Goldenberg is world-renowned. So we know we're in the right place."
Indeed, the Thrombosis Program at ACH JHM brings tremendous expertise in determining and monitoring the optimal intensity and duration of therapy for blood clots in children. Dr. Goldenberg is, in fact, leading an international trial to optimize the length of anti-clotting (blood "thinner") treatment in children with thrombosis (the "Kids-DOTT" trial), and is also on the forefront of efforts to determine the effectiveness and safety of clot-buster approaches in children like Angela."
Angela used a wheelchair to get around East Lake High in the final weeks of the school year and began walking on her own, wearing a compression stocking, only two days prior to her follow-up appointment in the Thrombosis Clinic. Now 16 and a high school junior, she may still have blood clots in the future and issues with veins. "We don't know what's going to happen, what her body will do," Karen said.
Dr. Goldenberg, however, expressed cautious optimism. "Our experience has been that, with careful identification of underlying risk factors for thrombosis, and addressing those factors through treatment and prevention strategies, fewer and fewer children with even severe blot clots are developing second blood clots later on."
The ordeal was a hard lesson to learn about contraceptives, but that's why both Karen and Angela are eager to share their knowledge in order to help other women.
"Blood clots have always been a potential side effect of the pill, even 30 years ago when I was on it," Karen said. "And they still haven't been able to develop the perfect one to prevent that side effect. We didn't think anything of putting Angela on the pill because I had no problems and there's been no family history whatsoever of strokes, blood clots or any type of blood disease."
Their advice: "Even though we had no family history, I would recommend that people research their family history -and research your options," Karen said. "There are different ingredients in oral contraceptives and some varieties have been reported to have higher risks of thrombosis than others. So people need to check it out and talk to the doctor about options."
Meanwhile, Angela has been steadily improving and enjoying some added attention. She has given print and TV interviews about her charter participation in iPICS, which spans the St. Petersburg and Baltimore campuses of Johns Hopkins Medicine. She even got to throw out a ceremonial first pitch at a Tampa Bay Rays game this past summer, reaching the plate admirably with a ball caught by starting pitcher Chris Archer.
She's also feeling a little stronger and taking part in more activities. "My leg is doing a lot better and I've started going to the gym more often," he said. "After the whole leg situation, I wasn't able to drive for two months but I just got my license."
In addition, she met with her school counselor after summer break and switched her schedule to take anatomy classes, "I want to be a nurse," she said. "I'm very interested in doing that and going to a college with a nursing program, I've really been inspired by the people who helped me get better."