Finding Our Hemophilia Home

Our daughter Zoe’s hemophilia diagnosis did not come easily. Despite a family history of hemophilia, we were sent home from our local hospital’s emergency room, even after she had been bleeding for several days following a mouth injury. Because of her gender, the doctor dismissed our suggestion that she could have a bleeding disorder. It wasn’t until we came again a few days later, when Zoe had to be admitted to the hospital due to how severe the bleeding had become, that she finally received her diagnosis of hemophilia.

Even then, follow up was slow, despite her low clotting levels. When she suffered another bleed following a head bump a couple of weeks later, we realized we needed to find a team that could better support us. Luckily a close friend happened to know someone whose family was at the Hemophilia Treatment Center (HTC) at Weill Cornell, and we were relieved to connect with someone who had had a positive experience with their care team.

From the get-go we were impressed with Weill Cornell–but the staff’s care and enthusiasm most of all. Our first visit was filled with supportive, smiling faces–happy to meet Zoe and there to provide resources we didn’t know existed. The nurses helped speak with our daycare at the time to fully explain Zoe’s new diagnosis, and her doctor was kind, thorough, and took us through all the options available to us for preventive and reactive treatment, along with explaining what that might look like for our family. The social worker provided us with a clear, thorough slideshow to share with her caregivers that we still use for her school and summer camp. She also told us about NYCHC which has provided a great connection to local families and community events.

Even if she’s not a fan of the bloodwork, Zoe looks forward to seeing her nurses and doctors during every visit to the HTC. When Zoe broke her arm this fall, her doctor coordinated with the team at the ER to walk them through all the special needs of a patient with her condition, from the infusions to a special cut on her cast which would allow us to monitor for any swelling.

From bleeds, bumps, and bruises to remembering Zoe’s favorite color and the names of her stuffed animals, the entire team has been and remains so supportive. We are so grateful to have them as Zoe navigates life with a bleeding disorder.