Even though Jennifer’s youngest child, Nicholas, now 8, has severe hemophilia B, that hasn’t held him back. In fact, he’s busier than ever with sports and activities, all of which were discussed with his hemophilia treatment team, who helped determine the activity level and the dosing regimen that was right for Nicholas. In the spring you’ll find him outside playing baseball, in the summer it’s swimming, come fall he can be found playing soccer, and during the winter he’s on the basketball court. Outside of sports, he has also been selected as one of a handful of second graders to be part of a special STEM program, an educational program that focuses on science, technology, engineering, and math.
Like many parents of children with hemophilia, going to school can be worrisome. But Jennifer says the transition has gone smoothly. “When Nicholas started kindergarten we did an educational presentation with the school nurse and the class. They have all his records, they know about his factor, and if there’s a problem, they’ll call us,” she says. “They recently called us when he lost a tooth, in fact, for some reason he chooses to lose teeth at school, so we’ve received quite a few calls for that. We’re happy we have a good connection with the school and a close relationship with the school nurse.”
Jennifer and the whole family also have a close relationship with their local hemophilia chapter. “We all attend hemophilia events,” she says, “and I serve on the board for the Hemophilia Foundation of Maryland. We are very fortunate to have found the Coalition for Hemophilia B, which has been a godsend for us. The coalition has been so important, especially because it’s dedicated to hemophilia B and we, as parents, are able to listen to the latest research and learn about what’s going on in the community.”
Even Jennifer’s 19-year-old daughter, Kaitlyn, is actively involved with the hemophilia community. “She’s a freshman in college now, going to nursing school, and received a scholarship this past fall from the Maryland chapter for hemophilia. As her school schedule permits, she will go out of her way to attend events and was most recently at the annual meeting.” Jennifer also points out that Kaitlyn has chosen to focus on pediatrics in nursing school and believes helping out with her brother and younger sister Megan, 16, who has Williams syndrome, has played some part in that decision.
Today, Jennifer says they are all doing great, including Megan, who recently underwent open-heart surgery for an occluded artery. The family is also very busy with Emily, 10, who is very helpful with and close to her brother, even with her calendar full of activities including soccer, basketball, swimming, and acting.
As far as Nicholas’ treatment goes, Jennifer says they make sure to keep him involved to educate him about hemophilia B and include him in his care, since he will have to eventually take over his treatment. “He attends hemophilia events and he got to go to camp for the first time this past summer,” she says. “He got to learn about infusing and learned a lot from the older boys in the camp.”
Overall, Jennifer has only positive things to say about the whole family and their experience living with hemophilia B. “We’re doing great; Nicholas is doing great. It was scary when he was born, but I really truly feel that it’s made us stronger as a family. It hasn’t changed the way that we live our lives. We don’t live it for hemophilia. We’ve made so many life-long friends through the hemophilia B community who we probably never would have known had Nicholas not had hemophilia. We’re very blessed with the friends that we have and with the community that we have. We are truly blessed that he’s doing so well and getting the care that he needs.
Jennifer M and her husband, Matthew, are the parents of four children: Kaitlyn, 14; Megan, 11; Emily, 5; and Nicholas 3. Megan is a special needs child with Williams syndrome and Nicholas has hemophilia B. There was no previous confirmed diagnosis of hemophilia in the family, although Jennifer's brother died from an intracranial hemorrhage weeks after birth. A diagnosis of hemophilia was not expected when Nicholas was born until a heel-stick after birth produced oozing, a factor level of less than 1%, and a confirmative diagnosis of severe hemophilia B.
Nicholas was then treated with factor, and he remained in the hospital for 1 month after birth. His factor level improved, but he developed complications and will never be able to have a catheter. When he needs infusions now, his family takes him to the ER. Because of the complication, Nicholas is under the care of a cardiologist, as well as a hematologist.
Jennifer M and her family are extremely pleased with all of the resources available to them through the hemophilia B community. The family attends numerous events and conferences every year, and their older daughter, Kaitlyn, has become involved with other siblings of young children with hemophilia B. She recently attended “Advocacy Days” in Maryland with her parents, where she spoke with a local congressman about resources for children with hemophilia.
When we spoke with Jennifer, we asked her how she managed having a toddler with hemophilia and a young special needs child. Jennifer replied, "We haven't stopped for hemophilia. We use all of the resources in the hemophilia B community, and as a family, we have made many friends." She feels very strongly that every family with a child with hemophilia should get involved with an HTC as soon as possible and take advantage of the education and socialization available to the entire family.
When asked about concerns for the future, Jennifer said, "We worry about treatment for Nicholas as he gets older and the fact that he cannot have a port for preventative treatment. Right now he is on-demand only. We take lots of precautions in our home, and outside of the home as much as we can. For now, we focus on exercises for Nicholas.
Nicholas will begin preschool in the fall, and Jennifer plans to hold an educational session with the teachers and staff at the school. The family also plans to attend a camp with Nicholas in the near future.