Living with hemophilia; Beyond the hospital

Staff Writer
Columbus Parent

STORIES OF COURAGE: Jordan's story

When minor injuries could result in major problems

Jordan is an active 9-year-old who loves playing sports. He's similar to a lot of boys his age, except for one major difference, which sometimes keeps him on the sidelines.

"Football is his favorite sport, which he knows he can't ever play, but he loves to watch it and go to the games," said his mother, Patsy.

Jordan can't play football, because he has a rare, inherited bleeding disorder called hemophilia. Hemophilia is a condition in which the blood does not clot normally, causing continued or excessive bleeding following an injury. This also puts him at higher risk for internal bleeding. As a result, something as simple as a twisted ankle could cause major problems.

"It was hard at first," said Patsy. "When he was about 5, he had a rough time because that's when he was told he couldn't play football. He rebelled a little. Then he realized that he could play catch and flag football."

At Nationwide Children's Hospital, specialists work with Jordan and his family to help them manage his bleeding disorder so Jordan can focus on being a kid.

"Years ago, hemophilia really was a disease that caused a lot of morbidity, and the kids spent a lot of time in the hospital for treatment of spontaneous bleeding in their joints or muscles," said Bryce Kerlin, MD, hemophilia treatment center director at Nationwide Children's Hospital. "Over the years, with better treatments and more concentrated medications, we've been able to transition most of that care into the home setting and keep the kids out of the hospital most of the time."

People born with hemophilia have little or none of a protein needed for normal blood clotting. As a result, they must receive the protein artificially.

"Unfortunately, there's no pill for this illness," said Dr. Kerlin. "It's a disease where the only way to treat it is to replace the missing protein directly into the bloodstream."

Jordan receives infusions of the protein several times a week, either through a port or through injections his mother administers directly into his veins. Although uncomfortable, the infusions allow Jordan to lead a relatively normal life. "We give him an extra dose before he plays, so that he'll be protected in case he twists his ankle or lands on his knee," said Patsy.

Jordan still has his limitations, and although he plays flag football, contact sports are out of the question. Still, his mother says he's able to just be a kid--something that years ago may not have been possible.

PEDIATRIC ADVANCEMENTS: Study finds gymnastics is among riskiest sports for girls

Home to Ohio's largest pediatric hematology and oncology program, Nationwide Children's Hospital provides the most innovative, research-based treatments, while also caring for the emotional and psychological well-being of young patients and their entire families. That's why each year, Nationwide Children's hosts "infusion weekend," a program that teaches hemophilia patients and their families how to manage the blood disorder outside of the hospital setting.

"It's a family learning experience," said Nationwide Children's physician, Bryce Kerlin, MD. "You can't take care of the child without taking care of the family, and that's what this weekend is focused on."

In addition to learning about physical therapy options, first aid techniques and the role genetics plays in hemophilia, patients, like Jordan, have the opportunity to practice infusing their own medication, necessary to aid in clotting.

"Eventually, they're going to want to go to summer camp for an entire week, and Mom is not going be there," said Dr. Kerlin. "They're going to want to go to college, and Mom is not going be there. At some point in your life you have to become independent in your own health care."

Family members, including parents, grandparents and siblings, also practice administering the infusions so they can help provide care outside of the hospital setting and be available to assist in case of an emergency. Today, Jordan still depends on his parents for his injections, but one day he knows he'll want to learn how to care for himself. "Because when my parents aren't there, I'll be able to do it all by myself," said Jordan.

FAST FACTS: Bleeding disorders

Nationwide Children's Hospital's Hemostasis & Thrombosis Center offers comprehensive treatment for all types of bleeding disorders and is one of 130 federally-designated hemophilia treatment centers. While hemophilia is a rare and severe bleeding disorder, other mild bleeding disorders are fairly common. If you notice any of these symptoms, please discuss them with your family pediatrician:

  • Unusual bruising
  • Excessive nosebleeds
  • Gum bleeding
  • Difficulty with heavy periods (in girls)
  • Hemophilia is a rare, genetic bleeding disorder.
  • About 18,000 people in the United States have hemophilia.
  • Each year, about 400 babies are born with the disorder.
  • Hemophilia almost always occurs in males.