Becoming a parent is an experience fraught with challenges. Add a bleeding disorder to the mix, and it can quickly become overwhelming.
Given the hereditary nature of bleeding disorders, some new families are familiar with them, either through relatives’ experiences or their own. But for families that are less familiar, a child’s diagnosis can make them feel like a deer in headlights, says Sue Geraghty, RN, MBA, former nurse coordinator at the University of Colorado Hemophilia and Thrombosis Center in Aurora. She worked with families such as these for 25 years, before retiring in 2013. Geraghty and other experts share key lessons for parents new to bleeding disorders.
Lesson #1
Your child is normal.
Forget what you may have heard about bleeding disorders. They’re not the deadly conditions they used to be. “We don’t expect the life expectancy of a child born with severe hemophilia or severe von Willebrand disease to be any different than any other child born today,” Geraghty says. She encourages parents to realize that they have a normal child who happens to have a bleeding disorder and that their child can expect a full life.
Lesson #2
Treatment is available for your child.
“Every disorder has something that we can use to control bleeding,” says Jim Munn, RN-BC, MS, program and nurse coordinator at the Hemophilia and Coagulation Disorders Program at Michigan Medicine in Ann Arbor. Depending on the severity and type of your child’s bleeding disorder, preventive treatment (called prophylaxis) may start as early as toddler age.
Lesson #3
You’re not alone.
A robust support network exists in the bleeding disorders community, with both national and local resources available. The epicenter of your child’s care will probably be a hemophilia treatment center (HTC), a medical facility that provides state-of-the art care, a staff experienced with bleeding disorders and comprehensive services for patients and families, including physical therapy, genetic counseling and psychosocial support. (Find the HTC nearest you by visiting: https://dbdgateway.cdc.gov/HTCDirSearch.
The National Hemophilia Foundation (NHF) offers a resource called Steps for Living (stepsforliving.hemophilia.org) that provides a wealth of practical information for new parents. Additional resources include other parents and your local NHF chapter, which sponsors social activities such as weekend retreats and educational get-togethers.
“There are a lot of people out there that understand, and they’re willing to help,” says Zach Walker, a member of the planning committee for NHF’s Annual Meeting who is overseeing a track of sessions for newly diagnosed families.
Lesson #4
Emergencies can be managed safely.
It’s essential that all parents of children with bleeding disorders learn the signs and symptoms of bleeds and when to seek extra help to manage them. While common sites for bleeds are the knees and ankles, the most serious type of bleeding is an intracranial hemorrhage (head bleed), says Munn. Your HTC will provide contact information to use in an emergency; the HTC is available 24 hours a day. If you go to a hospital, bring your child’s clotting factor medication and his or her emergency letter (provided by your HTC). If a parent hasn’t already infused the child before heading to the emergency room, Geraghty says to press the ER staff to infuse before performing diagnostic tests such as CT scans and X-rays.
Lesson #5
You will be able to travel as a family.
With some planning, Geraghty says travel within the US is no problem, and even international travel is possible. “You can travel by car, you can travel by train, you can travel by plane,” she says. Your HTC can provide a travel letter for use at security checkpoints. Similar to the emergency letter, a travel letter adds details about how much treatment product will be in your carry-on luggage. Another smart step, Geraghty says, is to find out where the closest hemophilia center is to your destination; you might ask your home HTC to pass along your child’s information in advance.
Lesson #6
Never be afraid to ask questions.
Geraghty encourages parents to keep a running list to bring to appointments, even for questions they might think are silly or unimportant. “You can never have too many questions,” she says. “That’s part of the role of the nurse on the team: to answer questions for newly diagnosed patients and parents.” For urgent issues, don’t hesitate to call your child’s healthcare team. “If you have a question and the treatment center is not calling you back, call them back.”
Lesson #7
You will be able to leave your child with a babysitter.
Your child’s bleeding disorder shouldn’t prevent you from having a date night or just a few hours to yourself. As with any caregiver, you’ll want to leave the sitter your contact information and the name of whom to call if you can’t be reached. Geraghty recommends explaining what would constitute a significant injury and sharing when your child’s last infusion was (if on prophylaxis). For repeat or long-term caregivers, Munn notes that most HTCs offer home visits, where babysitters, grandparents or anyone who might watch the child can ask questions of medical staff. Similarly, if you plan to place your child in day care, the personnel there can be educated about bleeding disorders.
Lesson #8
Your child will be able to participate in fun physical activities.
“Toddlers can do just about anything that a toddler does,” Geraghty says, citing common activities such as swimming and mommy-and-me gymnastics classes. “All of those things can be accomplished without any undue risk.” It’s also important to remember that not every child is geared up to be an athlete, bleeding disorder or not. “Don’t forget all the other things that can enrich their lives as well,” she says.
Lesson #9
Camps can be an invaluable resource for you and your child.
In addition to his role on the planning committee, Walker and his wife, Marlyn, run Camp Red Sunrise, an annual camp for families affected by a bleeding disorder. The camp is offered every June through the Idaho Chapter of the National Hemophilia Foundation. Walker recalls a moment from his second year of running the camp, when he learned why a 7-year-old boy was so excited the first day. “He did not know until that day that there were more kids with hemophilia than just him,” Walker says. To find a camp near you, use NHF’s Camp Directory.
Lesson #10
You won’t live at the doctor’s office—or the emergency room.
Many newly diagnosed families fear that their life will become an unending rotation of doctor appointments and ER visits. That’s probably not the case. “Yes, you are going to see your healthcare providers more frequently than you would have with a child who’s not affected with a bleeding disorder,” Geraghty says. “Do you have to run in every time something happens? No.” She explains that many issues can be managed at home with guidance from your healthcare provider. “Our goal is to get parents to the point where they are independent.”