If you’re a parent whose child requires painful medical treatments, you’ve undoubtedly felt the same sense of frustration and helplessness as Shannon Walters Vennie of Camp Hill. Her son Noah was born with severe hemophilia.
“Everybody thinks that if they get cut, they bleed to death. That’s not true,” says Shannon, who is also mom to two daughters, ages 14 and 20, and works as a behavioral analyst for a local school district. “But they can have some serious internal bleeding.” Noah, 13, had his first bad bleed at about 9 months old; more soon followed. Eventually, when he was 20 months old, his doctors decided to treat him prophylactically. That’s when the regularly scheduled, painful shots — intravenous infusions of a clotting factor — began, first weekly and eventually three times per week.
The Vennies had a homecare nurse who would come for Noah’s infusions. “As soon the doorbell would ring, he knew it was [the nurse] and he’d run and hide because he didn’t want to do it,” says Shannon. “We’d have to literally pull him out. Just from the beginning the whole thing was a really negative, painful experience. I would call different people and ask around and be told, ‘You just have to get through it,’ ‘You just have to hold him.’ Stuff like that. But the research shows a lot of times these kids just don’t get over it. The anxiety just grows and grows. I know I’ve talked with grown men with hemophilia that still to this day avoid the needle stick. They’d rather deal with the pain of an internal bleed than a needle stick.”
Distract, reward and make “normal”
Fortunately, at that same time Shannon was working on her master’s in applied behavior analysis; she was enrolled in a class called ‘behavior pediatrics’ which was, she says, “basically applying the concepts of applied behavior analysis to medical treatments to kids.” With her professor’s guidance, she researched techniques and learned that for some other types of painful medical treatments, like cancer or blood draws, some care providers used a combination of distraction, positive reinforcement and counter-conditioning. She decided to combine all of that to develop an intervention for her son.
Most parents, whether or not their child has special needs or has any recurring medical treatments, are probably aware of distraction and positive reinforcement. Counter-conditioning, as Shannon describes it, is going through the motions of an entire medical procedure without the pain. “We would just basically practice,” she explains. “Noah would get his infusions in the kitchen, so we would hop up on the counter and put everything out and pretend go through the steps. It made it more normal and it wasn’t as scary because we went through the whole thing.”
At her professor’s suggestion, Shannon took videos of Noah during treatment before she began implementing applied behavior efforts and then once she started, and was startled at how far and how quickly he journeyed in overcoming his anxiety. And while she says that all three parts of the intervention are important, she credits the counter-conditioning as crucial.
“When you have a child that’s had some negative experiences with needles or infusions or whatever, they build up all these anxieties so it’s really hard then to really care about the distractions you’re providing, or the positive reinforcement,” she explains. “So the counter-conditioning was really helpful to reduce that anxiety.” The distraction Shannon used with Noah was a movie played on a portable DVD player.
“Nowadays, you can have an iPad, you could have God knows what that could probably be even better. But back then, we saved the DVD for that,” she says. “Before, I had to typically hold him, restrain him. He would scream, cry. It was really traumatic for everybody. And then, after about four weeks, he was sitting by himself, watching his movie. He was calm.”
Shannon’s research was published in the Journal of Hemophilia. “It’s strictly a medical journal, so for them to put something more behavioral in was pretty cool.”
As for Noah, he began self-infusing at around 11 years old.
“The Hershey hemophilia treatment center is great,” Shannon says. “They come in and they teach [children who are ready] how to self-infuse. He used to do it three times a week but now it’s once every five days” because the clotting factor is now longer lasting. That was especially timely as Noah’s veins were starting to fail due to being stuck so often. “He gets more of a break now,” his mom says, “but he does it himself. I know lots of adults who couldn’t even do that.”
Reflecting on why attention hasn’t be paid to pain management and the anxiety of those getting their prophylactic infusions in the treatment of hemophilia, Shannon looks to its clouded past. “In the 80s, a lot of the factor used to treat hemophilia was tainted with hepatitis C and HIV,” she says. “Almost the whole generation of young boys, young men with hemophilia had died from that. The history had been so dark that people weren’t necessarily as worried about little kids not wanting a needle. I know when I was researching this at the time I looked everywhere for the use of these treatments within hemophilia because I thought I would save myself some time, and there wasn’t any.”
After finding the treatments that had been used in other pediatric applications and using them successfully with Noah, Shannon realized that it might seem like common sense, but maintains that it is not. She explains, “The first time I took Noah in to get treated, I was so upset. I was crying and trying to console him. Even the research shows that trying to express empathy during a treatment can increase the likelihood of a child needing restraining, so it’s kind of counterintuitive of a mom — you just want to make it better. Which is not to say don’t ever talk to your child about what’s going on; I don’t mean that at all. But in the moment, it’s better to distract them and get their brain thinking about something else because the more they think about what’s wrong, the bigger and bigger it gets. We all do that.
“Talking to a bunch of parents, I’ve learned that some parents kind of do this more naturally,” Shannon continues. “Some doctors do, too. They’ll sing, they’ll get them engaged. Which is so much better than, ‘It’ll be OK. You’re doing great.’ Because that’s just getting them more and more engulfed in the thing that’s causing them the anxiety.”
Shannon sees the strategies she successfully used with Noah working for children with any ongoing condition that requires regular, painful interventions. She recommends saving the “distraction” portion of the ‘distraction, positive reinforcement and counter-conditioning’ for the procedure itself. “If it’s something they can watch all of the time or play all the time, it’s not going to be as powerful,” she explains. “If they save it for the intervention, it’ll be much more effective. For Noah, we had certain movies that he could only watch during this time. So again, he was more motivated to watch it. If he could watch it all the time — like if a kid could see that Elmo episode every day, they’re not going to care as much, but if it’s something that might be special or new? Or a new app?”
As for Noah? He’s doing great. Shannon says she’s really proud of him for self-infusing for two years now, and for how he’s adjusted to his genetic disorder.
“He doesn’t love having hemophilia, but it’s just kind of part of his life now. It’s not a big, negative thing looming over him anymore.”
Leslie Penkunas is the editor of Central Penn Parent.