I was diagnosed with hemophilia A at 4 days old. My parents had no idea what it was, but they discovered that my mom was a carrier. They brought me to the Boston Hemophilia Center. It helped them to learn about hemophilia together with other families going through the same thing.…
As soon as Madhu and Sugastha’s daughter, Vasudha, was born, a nurse performed a routine blood prick to check the baby’s glucose levels. Since Sugastha had developed gestational diabetes during her pregnancy, the test was making sure that her newborn daughter’s blood sugar was within a healthy range.
“But then, that little spot on her toe didn’t stop bleeding for more than a day,” Madhu recalls. “The nurses chalked it up to the fact that she was a little baby, kicking her feet around, and that’s why the bleeding wouldn’t let up.”
It was just the beginning of mysterious bleeding events though. Over the first year of Vasudha’s life, her parents noticed strange instances of prolonged bleeding that resulted from small scrapes. When she was 8 months old, they grew concerned when bruises began appearing all over Vasudha’s body for seemingly no reason. Their elder son, Saketh, had never experienced any of this when he was a baby.
“We went to our pediatrician and he told us about the possibility of von Willebrand disease,” Madhu says. “Up until this point, I had heard about hemophilia but didn’t have any other knowledge about bleeding disorders.”
Von Willebrand disease is the most common inherited bleeding disorder — as many as 1 in 1000 babies are born with it — and it affects the body’s blood clotting process. There are several types of the disease; they are known as Types 1 through 3, with Type 3 being the rarest and most severe form of the condition.
“Our pediatrician ordered a blood panel test for Vasudha,” Madhu says. “He called us with the results and said that it was the worst-case scenario, Type 3 von Willebrand disease.” …