Chicago, Illinois, United States
Jen DeBouver has experienced the unimaginable pain of losing not one but two children. The first was a daughter who was stillborn. Jen lost her daughter ten months before her son Asher was born in September of 2012. While she was 26 weeks pregnant, Jen and her husband J.D. received the devastating news: Asher had a congenital heart defect called aortic stenosis, an abnormal narrowing of the heart’s aortic valve, which stops blood from flowing properly out of the heart to the rest of the body.
“The doctors gave us the option of doing a fetal intervention or waiting until he was born,” says Jen, who has created the Asher James Congenital Heart Disease & Thrombosis Foundation, to honor his memory. “But we found out that Asher had more issues than just this defect and without the surgery he would not live until birth.”
Both mother and baby made it through surgery without any complications and Jen realized what a fighter her son was. When he was born, the doctors told Jen and J.D. that the combination of Asher’s heart problems were rare. Every time the doctors thought he wouldn’t make it through, they would say, “If anyone can do this, Asher can.”
When Asher was four weeks old he developed blood clots in his jugular veins and arms which restricted blood flow to his heart and brain. Various treatments and medications were used to break up the clots, but they would reform.
Says Jen, “We learned during this time that adult medications were being used on children and that there was little awareness of clots in children this young, and little research.”
Asher fought these clots for almost three weeks, until he lost his battle at six weeks of age. Doctors told Jen the clots were probably caused by moving the central venous line (used to administer medication and fluids), from his foot to his chest, since the line was beginning to fail, and the fact that Asher had limited mobility.
In addition to creating the foundation in Asher’s memory, Jen and J.D.’s organization is also a partner for this year’s World Thrombosis Day, along with over a hundred agencies and organizations from around the world, dedicated to educating the public about blood clots.
“Our hope through our foundation and World Thrombosis Day is that people realize this is not something that happens to only the elderly,” says Jen. “Everyone young or old needs to know the risks, signs and symptoms, and not ignore them.”