Hemophilia
When Tisha and Brian Ward of Montgomery learned they were expecting baby Evan, they knew the likelihood of him being born with hemophilia was high. “I’m a carrier. I found out in my early teenage years and my younger brother was born a severe hemophiliac,” Tisha said. “We knew there was a chance, so we just knew we had to plan accordingly.” Hemophilia is a blood disorder in which the blood does not clot properly. According to the U.S. Centers for Disease Control and Prevention, there is a family history of hemophilia in about two-thirds of cases. Tisha’s obstetrician-gynecologist worked with her hematologist to prepare a proactive birth plan, and Evan was born on May 22, 2005. Cord blood was drawn at birth and sent to the lab for testing. A few days later, the results were back – Evan had hemophilia. “They were pretty sure at that time he was severe, but they wouldn’t know for sure until more blood work was done,” Tisha said. “For that, we chose to go see a pediatric hematologist at Children’s of Alabama.” A few weeks after Evan’s birth, the Wards arrived at Children’s, where it was determined Evan had a severe case of hemophilia. Evan started prophylaxis therapy by the time he was 1 year old. Prophylaxis is the regular infusion of clotting factor concentrates in order to prevent bleeding. “Typically, you want to start the therapy before there is ever any trauma that could cause a bleed,” Tisha said. “We worked out a plan with his doctor to come back in and start the therapy before the 12-month mark.” But when Evan was about nine months old, the Wards unexpectedly found themselves back at Children’s earlier than expected. Evan had a knot on his head and their local hospital emergency department was not prepared to treat him. “With hemophiliac patients, you have to first give the needed medication, which has to be done intravenously. They tried sticking him eight times and couldn’t get a vein,” Tisha said. “We made the decision to load him up in the car with his medication and head to Children’s.” After arriving at Children’s, the Wards were pleasantly surprised with the outcome – the nurse hit the vein on the very first try. “It was absolutely amazing,” Tisha said. “The nurse walked in and found the vein, and Evan didn’t even move. It was so quick. It was an amazing experience.” The Wards returned to Children’s a few months later to have Evan’s port put in so that he could take his medication every other day at home without having to find a vein every time. The nurses taught Tisha and Brian how to administer the medication at home. Evan used the port for 10 years until he was old enough to learn how to self-infuse. “Once he was comfortable and we were comfortable, we had the port removed,” Tisha said. “It was an outpatient procedure done at Children’s and it couldn’t have gone better.” Evan continues to take his required medication intravenously every other day and sees his hematologist, Dr. Christy Bemrich-Stolz, once a year. He and his family couldn’t feel more blessed. “He has had no complications, no joint or head bleeds, nothing that many patients with hemophilia typically experience,” Tisha said. “We’ve been so blessed, especially with having the care from the team at Children’s. We couldn’t get him better care anywhere else.”
