Update, March 2013: The American Academy of Pediatrics published a clinical report, "Evaluation for Bleeding Disorders in Suspected Child Abuse," outlining how to assess bleeding and bruising in children.
Leah Brundage and her then-two-year-old toddler, Mitch, were out for an afternoon stroll at the local mall in Niagara Falls, New York, one summer afternoon when she had an unsettling experience. Mitch has a rare thrombocytopenia-type platelet disorder called combined alpha-delta granular storage pool deficiency. He had a black eye and his cheeks and arms were bruised.
“This mother who was walking toward us with her child looked at Mitch in disbelief and then at me in disgust,” Leah says. “She looked at me like, ‘What kind of mother are you? What did you do to him?’ I thought about the stares and hoped they would not follow Mitch throughout his life. I’ll never forget it.”
Pediatric hematologist Margaret Heisel Kurth, MD, director of the Children’s Hospital and Clinic of Minnesota Hemophilia and Thrombosis Center in Minneapolis, understands why some strangers stare in this age of child abuse awareness. She notes that even trained healthcare providers may have difficulty determining whether the bruising they see is associated with child abuse or a medical condition. Heisel Kurth stresses that it is important that physicians who treat children be aware of all of the potential medical causes of frequent bruising so that parents are not wrongly accused of abuse.
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Beverly and Greg Simmonds of Annandale, Minnesota, say they were accused of child abuse by their toddler’s pediatrician when they took him in for a fractured arm. Their son, Jason, one year old at the time, had fallen out of his crib in an attempt to climb out on his own. Beverly recalls, “Both bones—the radius and the ulna—were broken. The doctor became really angry with me. He called me an ‘unfit mother’ and asked how I had broken his arm.” When the Simmonds family went to the hospital to have Jason’s cast removed, he was in worse shape than when it was put on. This time, doctors suspected a bleeding disorder and conducted lab tests. Jason was diagnosed with severe hemophilia A.
Heisel Kurth says she believes that education is the best route for parents’ peace of mind. “MedicAlert® bracelets are good, but they may not be enough to stop the stares,” she says. “Parents need to inform people about what is going on. People do look at kids and wonder what is happening to them.”
Vicky Hannemann, RN, has been a hemophilia nurse for 17 years at the University of Minnesota Hemophilia and Thrombosis Center. During this time, she has seen many children with excessive bruising and their worried parents. She counsels them and even role-plays in a clinical setting about how to react to stares when out in public. She learns how the child’s appearance is affecting the parent and then bases her advice on what is right for the parents’ comfort level.
“I figure out what the parent would be comfortable saying,” says Hannemann. “Educating strangers could make him or her feel more at ease and I suggest some simple sentences, such as ‘My child has a medical condition.’”
Hannemann says that while there is not one formula that will fit all situations for all families, there are several approaches you can take. She suggests using a medical ID bracelet because it indicates that the child has a medical disorder. She also suggests dressing the child in long sleeves and pants if the situation calls for it. Providing information to all key people who come in contact with your child is also critical. “It’s very important that day-care providers and school officials have information about the child’s bleeding disorder so that they know that the bruising they see is related to the child’s medical condition,” says Hannemann. “This also helps them to react should the child have a bleed.”
Leah says that these days she takes Mitch, now five years old, out in public and doesn’t feel the need to explain his medical condition unless someone seems genuinely concerned. “I take him out looking beaten and bruised and I don’t care anymore,” she says. “If some people look at him like, ‘Poor baby—what happened to him?’ and they seem concerned, I tell them that he has a bleeding disorder.”
Heisel Kurth says it is a tough call for physicians when children with undiagnosed inherited bleeding disorders show up in the emergency room with suspicious bruising that mimics abuse. She urges her colleagues to always take a good medical history and order lab tests to rule out a bleeding disorder when they see a child with abnormal bruising. Most physicians, when they see a child with suspected child abuse, will do necessary prolonged bleeding time tests. These tests can include prothrombin time and partial thromboplastic time testing to measure coagulation, or clotting ability—screening tools to determine whether the child’s clotting cascade is functioning normally. Test results can indicate a bleeding disorder, but it can still take hours or days for lab results, a concern for anxious families who are waiting to find out if their child has a bleeding disorder or other condition.
“A lot of physicians miss the diagnosis of Ehlers-Danlos syndrome, which is an inherited abnormality of collagen where we see doughy skin and bruising with poor wound healing,” says Heisel Kurth, who spoke about recognizing this uncommon disorder at the National Hemophilia Foundation’s 57th Annual Meeting in 2005. Ehlers-Danlos syndrome may be first diagnosed in the emergency room. It can result in blood vessel fragility that can manifest as easy bruising or bleeding. Bleeding tendency is rare, although one type is characterized by vascular rupture and bruising. “I try to educate primary care physicians, pediatricians and hematologists because a lot of these kids end up seeing their physician due to parental concerns about the bruising,” Heisel Kurth says. “I get many referrals with the question, ‘Does this child have an underlying bleeding disorder or medical condition that would explain this bruising—other than abuse?’”
Heisel Kurth says that many physicians are aware of bleeding disorders in children as a cause of bruising and they are quick to do a workup on a child for a bleeding disorder when bruising is present. A problem that remains, however, is that screening coagulation studies may not pick up some of the milder bleeding disorders, such as mild von Willebrand disease, rare factor deficiencies and platelet dysfunction disorders. This is why hematology is often the final stop for bruised kids before a determination of abuse is made. “My group sees one or two children a month who have bruising or other bleeding issues with a concern about abuse,” says Heisel Kurth. “The majority, unfortunately, turn out to be abuse rather than bleeding disorders.”
Hannemann says that when she was in nurse’s training, she was told that being accused of abuse is a very real issue for parents of kids with a bleeding disorder. “Kids can be very different from one another,” she says. “You’ll always have active, fearless risk-taking kids who will bruise a lot while others may be naturally more cautious, preferring to read books on a pillow. Some kids have siblings who pound on them.”
But Heisel Kurth stresses that just as kids are different, so are parents. “Some bubble-wrap the whole world around their child; others are more laid-back. It’s all individual.”
With prophylaxis, the regular infusion of clotting factor to prevent bleeding, you don’t see as much bruising in children with severe bleeding disorders, says Hannemann. “Of the kids I see at hemophilia camp, 75% or more of the kids with hemophilia are on prophylaxis now and it prevents most spontaneous bleeds and reduces the amount of bruising,” she says.
Bruises are nothing to be ashamed of, says Leah. “Hold your head up and be proud,” she tells parents. “If someone asks, don’t be afraid to explain that your son has a bleeding disorder that causes severe bruising. Don’t hide him. Mitch is a perfect little boy to us. He’s just going to be bruised, and that’s life.”