Listen to Your Gut
A mother’s intuition is a powerful feeling I’ve learned not to ignore. The moment that gut feeling became unbearable was when Evan was 11 months old.
His wrist, without apparent reason, had gradually become swollen and painful. We made a doctor’s appointment for later that day, and my anxiety increased as the hours went by and Evan stopped using that hand to play with. He’d had similar symptoms with another body part a few weeks before: pain, swelling, redness and warmth. Our doctor couldn’t pinpoint a cause and Evan was given an antibiotic in case it was some type of skin infection. Looking at his tearstained face, I finally caved in to my fears and asked for blood work. Something had to give me a definitive answer. That was when we found out he had hemophilia.
Evan had bruised easily since he started to move around. But with two daughters, I figured boys would be boys. Even though I was a registered nurse, I didn’t consider a bleeding disorder because no one in either my husband’s or my family had a history of them. Our son would have been diagnosed at least six months earlier. Luckily, Evan learned to crawl and walk without any injuries that became life threatening.
Few children are born with hemophilia. But, according to the Central New York Bleeding Disorders Association, up to 45,000 people in the area may be affected by bleeding disorders, of which there are several. Some 400 babies a year are diagnosed with hemophilia in the United States, but many more are under-diagnosed. One could be yours, and most doctors don’t discuss this with parents of newborn boys. More important than statistics is having information that could possibly save your child’s life.
Though most prevalent in boys, bleeding disorders such as hemophilia can affect girls as well. The odds of being affected are greater if there is a family member with bleeding problems, especially on the mother’s side, but it has been known to show up without any history at all, just like mine did.
Most boys are diagnosed shortly after birth if they’ve been circumcised because the site continually oozes blood and concerns the parents enough to contact their physician. Bleeding disorders mean a part of the blood clotting factor is missing or low, so areas bleed longer because a clot cannot form—or when one does, it is so weak it breaks with even the slightest touch. Some bleeds are easy to see, as with a cut or a circumcision.
Sometimes the bleed is not so obvious. Another sign that something may be amiss is a strong reaction to immunizations. Redness, warmth and tenderness are common, but if the area seems to get bigger and the baby is not moving the limb as much as usual, it could be an internal bleed. That usually means a blood vessel has broken while the skin remains intact. Instead of blood oozing everywhere, it collects under the skin and causes symptoms that can permanently affect joints and muscles. Those areas become “target” areas for further injuries that can lead to muscle contractures or joint replacements later in life.
That’s why I say trust your instincts: If something doesn’t feel right, it’s always best to get a second medical opinion. It’s worth the peace of mind.
My son’s bruising led me to consider the chance that he had a bleeding disorder. He was more physically active than our girls had been at his age, but I wondered if boys really bruised that much. By 9 months, he was almost constantly covered with several bruises. I didn’t want to traumatize him with a blood draw, but I knew it was the only way to figure out if we had a problem. It turns out Evan, and our youngest child, Brody, both have a severe deficiency in clotting factor VIII, also known as type A hemophilia.
Although most with severe hemophilia are diagnosed within the first month of life, the median age of diagnosis is 36 months, well into running, tumbling and climbing. For a toddler with this condition, a small bump on the head can be life threatening, especially since he can’t communicate well at that age. Diagnosing early can prepare parents to keep their children safe with protective helmets, padding and medication when needed.
Evan and Brody are now 8 and 6, and happy kids who are able to let us know when something is wrong. I’m glad I spoke up and trusted that uncomfortable feeling.
When to Consider a Bleeding Disorder
• Circumcision of a newborn results in oozing blood from site long after the procedure.
• Injections lead to heat, redness, pain and swelling at injection sites that increases over time.
• Minor cuts continually bleed despite pressure, or re-bleed with slight handling.
• Crawling causes bruising.
• Bruises appear on the body with no obvious origin or minor trauma.
Laura Livingston Snyder is a writer and mother of four who lives north of Syracuse. She blogs at nestingdolll.blogspot.com. Send email to her at email@example.com.
Photo above: © Danil Roudenko | Dreamstime.com