Kayla, Joel and Robbie’s story: Taking life with hemophilia one day at a time

joel hemophiliaHemophilia has always been part of Kayla Klein’s life. Her father, David, had the condition. Her son, 6-month-old Robbie (that’s him above), has it too.

For years, though, Kayla has also surrounded herself with the right people—people who know hemophilia and who have helped her and her husband Joel create a life where the condition isn’t something that happened to them. Rather, it’s part of their family’s normal. And they’re determined to make sure that it will never keep little Robbie—or them—down.

A life embedded in hemophilia

David died when Kayla was just shy of two. But it wasn’t from his hemophilia. Rather, like so many others in the 1980s and 90s, he died because the blood products he took to keep the disease under control were contaminated with HIV.

Hemophilia remained a lurking presence in her life growing up, but started coming to the foreground when she and Joel married. Because Kayla carries the hemophilia mutation in her genes, they knew there was a 50/50 chance that if they had a son he would have the condition himself.

When the couple started asking questions about hemophilia and family planning, a colleague of Kayla’s introduced them to Lori Dobson, a genetic counselor at Brigham and Women’s Hospital.

Ultimately, after working with Dobson to understand their options, Kayla and Joel decided to just go for it.

“We realized that we could do lots of things and not have a baby with hemophilia, but could still have a baby with something else,” Kayla recalls. “We decided to just go ahead and see what happened.”

The new normal

kayla, joel and robbie hemophiliaBy the time Kayla was 9 weeks pregnant, they knew they were having a boy. Seven weeks later, tests revealed that Robbie would indeed be born with hemophilia.

“It was hard for us to hear, but because of the early diagnosis, we really were able to plan and be more proactive than reactive,” Kayla says.

Kayla remembers that when she told her mother about the test results, she said, “‘This is your one day to be sad, but then you have to work this out, because it’s your new normal, and we are thrilled!’ And that’s the way that we’ve looked at it. We now don’t know anything different other than raising a baby with hemophilia.”

Early detection gave Kayla and Joel an opportunity to bring together the team—Team Rogers-Klein (Rogers is Kayla’s maiden name)—that’s helped care for Robbie even before he was born. People like Ellis Neufeld, MD, PhD, Stacy Croteau, MD, Loren D’Angelo, CPNP and the rest of the Boston Hemophilia Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center; and Margaret Manion, MD, at Longwood Pediatrics

“We immediately felt like we were part of the family in the center,” Kayla says. “When we travel they look up the closest hospitals for us if we have an emergency. They helped teach our daycare provider about the ins and outs of hemophilia. We couldn’t do it without them!”

The early diagnosis also helped get Robbie into a clinical trial early on. Kayla’s father’s immune system had rebelled against his treatments, producing antibodies called inhibitors that kept his infusions from working as long as they could.

That family history puts Robbie at higher risk of developing inhibitors himself. The trial he’s on is of a drug that may reduce that risk. “The study’s designed in such a way that if he does develop an inhibitor, we’ll be able to address it immediately,” Kayla says.

Taking the unpredictable as it comes

Kayla and Joel’s main goals are for Robbie to have a normal life like any other kid, and to not let hemophilia define his identity.

“I asked a doctor once, ‘What do I say? Do I tell people?'” Kayla says. “And the doctor asked if I were going to dinner with my friends and I invited a new friend whether I’d start out introducing her as a diabetic.

“That was the a-ha moment for me,” she continues. “Hemophilia doesn’t need to be the leading entry for Robbie. He’s a child first, and a child with hemophilia second. He’s doing everything that a baby would and can do, just with modifications as needed.”

It’s not that Kayla and Joel don’t have their concerns. Joel says, “While this has been unpredictable, we have our team and right now we have it under control. When the unknown happens, it will be scary but we’ll deal with it as it comes.” And Kayla half jokes that her biggest fear is the day Robbie gets invited to a jumpy house birthday party. “Those things are scary even if you have kids without bleeding disorders!”

But both of them believe firmly that they can’t keep Robbie in a bubble. “He’s going to have spontaneous bleeds. He’s going to fall off his scooter,” Kayla says. “He’ll have to learn his own boundaries, but we’re not going to tell him what he can and can’t do, so that he can lead a normal life, even when we’re not around.”

Learn more about pediatric hemophilia.