Common outpatient procedures like tonsillectomies and ear tube placements may require additional precautions or even an overnight hospital stay for children with bleeding disorders. Developing a comprehensive treatment plan can help ensure that every member of your child’s medical team is on the same page well before the appointed day. Careful planning can help prevent serious complications.
Getting your child emotionally prepared for surgery is also important. Learning how to manage fear and developing healthy coping skills are especially helpful as the day approaches. "It’s so important for patients’ early experiences with the medical system to be as positive as possible," says Amy Dunn, MD, director of pediatric hematology at Nationwide Children’s Hospital in Columbus, Ohio. "Needles and doctors and medical providers are going to be an important part of their lives.”
Don’t assume that medical professionals and surgeons understand the value of involving your hemophilia treatment center (HTC) team in patient care. If anyone suggests that a tonsillectomy or knee scope is no big deal, consider that a red flag, says Dunn. “You have the power to say, ‘No, that’s not happening unless you coordinate with my bleeding disorders team,’” she says. Getting your HTC involved, or using a hospital with a pediatric hematology division, will ensure that every detail gets the attention it deserves. This includes any pre-authorizations and special orders for clotting medications.
Planning for pain management is another important part of preparation. In the dental office of Melissa Kennell, DDS, in Gilford, New Hampshire, an outpatient procedure is only possible if children are comfortable receiving nitrous oxide or oral sedation. If it’s a more serious procedure or if the child is very young, Kennell recommends a hospital setting instead. “Most hospital cases are for kids 5 and under,” she says.
But your child’s age doesn’t necessarily dictate their comfort level. “We have some 4-year-olds who’ll wear the mask, and some 16-year-olds who won’t let you touch them,” says Kennell. She’s the mother of a son with severe hemophilia A.
Post-surgical pain relief should also be discussed ahead of time. “Acetaminophen is usually safe for patients with bleeding disorders,” Dunn says. Depending on the procedure, the doctor may prescribe an even stronger pain medication.
The fear factor
Having surgery can be daunting at any age. “Anticipatory anxiety is normal,” says Sharonne Herbert, PhD, a child psychologist at Children’s Hospital of Orange County in Orange, California.
Here are some suggestions that may help children of various ages cope with their fears:
5 and under: For toddlers and young children, it’s important to use age-appropriate language when explaining what will happen. “Kids are very literal,” says Constance Thibodeaux, MSW, LCSW, BACS, a hemophilia social worker with the Louisiana Center for Bleeding & Clotting Disorders at Tulane University School of Medicine in New Orleans. “It’s better to say, for example, ‘going to sleep’ rather than ‘knocking you out’ for anesthesia.”
Work with a Certified Child Life Specialist (CCLS), if possible, says Thibodeaux. A CCLS receives specialized training in providing emotional support and coping skills for children and families going through stressful life experiences. At Nationwide Children’s Hospital in Ohio, for example, a CCLS may use dolls with porta-catheters to teach young children about port surgeries in a nonthreatening way.
School-age children: A poker face is helpful for children this age. “Even though it’s anxiety-provoking for parents, if parents are calm, their child is going to feel calm,” says Herbert.
Herbert teaches her patients deep breathing techniques to help calm themselves. She also recommends progressive muscle relaxation. “These strategies give children a sense of how they feel when they’re anxious and how they feel when they’re relaxed,” she says. One mother used guided imagery with her child before the procedure. “She talked to her daughter about being on a swan boat in a pond. She reminded her to notice how the sun felt on her body, which the child viewed as calming and relaxing,” Herbert says.
Teens: Older children may withdraw when they’re scared or worried. Encouraging them to take an active role in the planning process can help quell anxiety. So can honesty. “Don’t spring anything on them,” says Dunn. “Tell them what’s happening and why.”
If detailed information about the surgery is too overwhelming for your teenager, consider a tour of the hospital. “Getting a sense of the layout and environment can be helpful for patients of any age,” Herbert says.
Remember: You know your child best. In fact, you may appreciate the nuances of his or her condition most clearly. So, rely on your instincts as you coordinate with your child’s care team and help your child prepare for surgery. That way your child will feel safe and sound, looking forward to life after surgery.