The Special Challenges of Having Twins with Hemophilia: One Mom’s Story (Copy)
Kole and Karter
By Michael Perlman
Having a child with hemophilia B presents parents and other family members with unique challenges. When they have twins who both have hemophilia B, those challenges can easily be doubled.
Kaila and her husband Wayne are both corrections officers and natives of Florida. When their twins were diagnosed with severe hemophilia B, their treatment center connected them to The Coalition for Hemophilia B where they have found resources, warm friendships, and support ever since.
Kaila’s delivery is one of the fewer cases where two twins are both born with hemophilia B. “When the boys were born in 2019, underlying factors contributed to the belief that there were greater challenges at hand,” Kaila explained. “Karter was in the NICU for 11 days after birth due to not being able to breathe independently since they were premature. The first 8 days that he was in the hospital where I gave birth, they heel stuck him and he would not stop bleeding. He was then transferred to another hospital, where they diagnosed him. Since he was a twin, they recommended Kola get tested, and his results came back positive for severe hemophilia B as well.”
“Our twins bring us joy and happiness, and we do not look at them like they have a condition,” said Kaila. They are also parents to a 6-year-old daughter, Kassidee, and Wayne’s two children, Shealynn who is 7 and Stetson who is 2. Kaila said, “The girls call the twins their babies, and Stetson just loves to smell and kiss them. They love them!”
Kassidee, Karter, Stetson, Kole and Shealynn
“When we first learned that they have a condition, I blamed myself, since as a mother, anything that happens to your children, especially while pregnant, you think is your fault,” Kaila said. She and her family asked many questions about hemophilia B. “I realized it is neither of our faults that our twins have hemophilia B and that God has a plan for all of us,” she said. “We love our children, and we are very grateful God chose us to come together, fall in love, and produce two of the most precious twins in the world. I wouldn’t change them or their condition for anything.”
Kaila explained that their dad’s cousin had hemophilia A, but it was unrelated. He had passed away from blood-borne infections. Much of her husband’s side of the family was well-informed about hemophilia, but her side was largely uninformed. She began conducting research and came across a few groups that help moms like her. She was grateful for the moral support and advice she received. “We all joined groups and attended sessions to be more knowledgeable.”
The challenges that Kaila faced have contributed to her strength as an individual and have helped to shape her family’s values to this day “I didn’t have the greatest childhood, so I had to grow up early and take care of my younger sister. I do not want that for my kids,” Kaila explained.
An obstacle transpired when Kaila received a call from the daycare center telling her that Karter was hit in the head by a wooden toy. In the emergency room, Kaila learned that the accident caused a brain bleed, and that Karter would need surgery and a shunt. “Karter had multiple seizures in the middle of the night in the hospital—it was one of the scariest things I have ever witnessed,” Kaila said. “But he came out okay.”
Kaila was there with him every single night and day, until COVID-19 restrictions limited her to only being able to go at night when their father got home to watch the other kids because the daycare closed.
Worrisome times in the hospital
Karter was in the hospital for eight long weeks. “56 days, 1,344 hours, 80,640 minutes and 4,838,400 seconds!”
Karter and Kole has surgery for their ports on May 4, 2020. They were doing well, especially Karter. “As if nothing has happened to the little guy!” Karter even remained in good spirits when he had to return to the hospital for a shunt malfunction, due to another incident in daycare which sadly resulted in another month inside the ICU, during a pandemic.
“Karter is doing so much better after therapy,” Kaila reported. That time was rough on the boys’ sister because she would cry every night for him and Kole didn’t sleep while Karter was in the hospital.
“As parents, providing our children with a loving home is a priority,” Kaila said. “God put us together with a plan. We may not understand everything and still ask why our twins have hemophilia, but God never gives you anything you cannot handle. For that, I am grateful.”