Ashley is somewhat new to the hemophilia community but has already worn many hats including mother to a child with hemophilia, carrier of hemophilia, volunteer, and most recently, executive director of a state chapter. Even though her uncle had hemophilia, she says she had limited experience with the disorder until her nephew was born. “My family wasn’t prepared for someone to be diagnosed with hemophilia again. I guess we thought since my mom didn’t have any kids with hemophilia, it just ended there. Then I realized I could have this too; it’s something I should think about when I have kids.”
Ashley was tested when she was pregnant for her first son, Leo, and learned she is a carrier. While Leo does not have hemophilia, her youngest son, Max, does. The diagnosis process was frustrating for her each time they tested her sons. “It’s such a rare disease that people aren’t familiar with testing for it. Both times the hospital botched the test and the baby had to go back in for testing.” It was difficult to sit by and watch her babies endure multiple painful needle sticks and maintain patience when she desperately sought out answers.
“With Max, finding out was hard, even though I knew it was a possibility. Nothing really prepares you for hearing those words.” Ashley’s biggest fear was that they would never get to have a normal life. “It felt so overwhelming thinking that this would take over. I was scared that it would take over our life.” The first few days after receiving his diagnosis were the hardest and were clouded by sadness. She could not stop herself from comparing her boys and how a normal part of childhood, like bumping your head, would have such drastically different implications for Max. However, Ashley knew she could not be sad forever. “I told myself it could be worse. This might present some challenges, but we’ll get through this as a family.”
Max suffered his first bleed when he was 8 months old. Ashley noticed that he would not crawl and would only reach for things. She knew something was wrong when he began to cry when she held his ankle while changing his diaper. She immediately called her HTC, The Louisiana Center for Bleeding and Clotting Disorders at Tulane; an ultrasound revealed an ankle bleed. Max began prophy treatment, which meant weekly travel to the HTC for infusions. When Max developed inhibitors, the need for a port became imminent. “Port surgery was stressful. Putting him to sleep was stressful and knowing he’d have a cut and permanent scar. When you have a child with hemophilia, surgery is just scary.”
Max’s port surgery took place one week before his first birthday, and Ashley expected to be in the hospital for 2 to 3 days. However, due to uncontrolled bleeding at his port site, he was in the hospital for 10 days. “That was scary. In the beginning, when it wouldn’t stop bleeding, I could tell the doctors and nurses were worried. It scared me. I was worrying about my other son who was worried about his brother. All of the unknowns were scary.” Their hospital stay ran so long that Max celebrated his first birthday in the hospital.
The hospital staff was very supportive and brought presents and a cupcake for Max. However, Ashley’s worries about having a normal life with hemophilia resurfaced. “I just cried. I was trying to get myself together, but it was so overwhelming to be there for his birthday. I wondered if every birthday was going to be spent in the hospital and if every celebration would be tainted.”
Cassandra comes from a long family history of hemophilia. Starting with her grandmother who passed it down to her father, then herself, and now her son, she describes her journey as phases of transition from being a daughter, a patient, an educator/helper, and now a mother, all beautifully protected by a bond between herself and her father that she now shares with her son.
When Cassandra was very young, her parents explained that she bruised easily because she was a carrier for hemophilia. However, the reality of it did not sink in until she was a junior in high school. She was an athlete excelling in her sport, pole vaulting, when she started to experience shin bleeds and was diagnosed with hemophilia.
She continued to pole vault through her college years, but her disorder presented many challenges. Cassandra did not know any other athletes with a bleeding disorder and was frustrated with how quickly others recovered from injuries, while she suffered for weeks. She often felt isolated by not being able to participate in practices and spending lots of time in the training room doing physical therapy. She was never really afraid of her hemophilia because she was “a bit ignorant of it.” In all the years she watched her dad work through his disorder and infuse, she did not realize that she was also affected by it and that was why she was getting injured so frequently and not healing properly. She began to seek advice from her father on how to manage her hemophilia, even preferring to call him before calling her HTC, because she has so much trust in his knowledge and experience.