Severe Hemophilia A
When Jason and Tabitha White were pregnant with son Cayden, they knew there was a chance he could have hemophilia – a bleeding disorder in which the blood clots slower than normal or not at all. Tabitha is a genetic carrier of the disorder and Tabitha’s father had Severe Hemophilia A. The Whites soon learned Cayden and his grandfather share the same diagnosis. “He got to go home a couple of days after birth like normal, but due to his diagnosis, our pediatrician referred us to our hematologist about a week later,” Tabitha said. The Whites were referred to Christina Bemrich-Stolz, M.D., MSPH, at Children’s of Alabama, where they received an overview of how to manage the condition, what to look for and typical protocol for a bleed. “The conversation included many tears as we learned about what the future may hold for Cayden, such as having a port put in, but Dr. Bemrich-Stolz was great about making sure she answered every question we had,” Tabitha said. “We walked away with a wealth of information and knowing how to handle Cayden’s medical needs.” Cayden was to have a port inserted to receive treatment when he was about a year old, however, Cayden didn’t experience any bleeds or problems until he was about 6 months old. “Because of that, we were thankfully able to delay the port,” Tabitha said. When Cayden began experiencing frequent bleeds, a weekly or biweekly phone call to the hematologist’s office or visit to Children’s Emergency Department became the norm. “Then we had to start considering having a port put in,” Tabitha said. “But we had an answered prayer and Dr. Bemrich-Stolz told us about a new medication that was pending FDA approval that didn’t require a port.” The medication is Hemlibra, which instead of being administered via a port, is administered via a subcutaneous injection – a method of giving a medication in the fatty layer of tissue just under the skin. “We were so thankful we had this unexpected option,” Tabitha said. “Not only did Cayden avoid having a port, but Hemlibra only had to be given once a week.” Cayden started the medication when he was 18 months old. He went from those weekly or biweekly bleeds to none at all. “It was an incredible change after starting the medication,” Tabitha said. “Before, he could just plop down on the ground too hard and have a bleed.” Now almost 2 years old, Cayden is still thriving on his medication. He’s running around, full of energy, enjoying his time playing sports and playing outside with his big sisters, Brynlee and Camryn. And most importantly, he’s able to experience it all without fear of having a bleed. “It has been an amazing turnaround since Cayden started his medication,” Tabitha said. “From the first time we met Dr. Bemrich-Stolz, we knew Cayden was in good hands. It was obvious she truly cared about him and was going to do everything she could to help him. I feel like we’re a team taking this one on. They have Cayden’s best care at heart.”
