To Play or Not to Play, the Challenges of Managing Pediatric Hemophilia

Episode 4


A young child living with severe hemophilia is adopted by a family in the United States. Prior to his adoption, due to a lack of resources and other challenges, his hemophilia was not properly managed. Dr. Meera Chitlur, a pediatric hematologist and the director of the Hemophilia Treatment Center at the Children’s Hospital of Michigan in Detroit, has treated this patient since he first came to the U.S. As he grew older, like many children, he wanted to play sports. But for people with hemophilia, participating in sports brings great risk. Dr. Chitlur shares how together with the patient and his family, they navigated the challenges of growing up with hemophilia and how new treatment options for pediatric hemophilia have opened up a whole new world for kids living with the disease.

Dr. Meera Chitlur

Dr. Meera Chitlur is the Professor of Pediatrics at Central Michigan University and Barnhart-Lusher Hemostasis Research Endowed Chair at Wayne State University. She is the Director of the Hemophilia Treatment Center and the Jeanne M. Lusher Special Coagulation laboratory at Children’s Hospital of Michigan. Dr. Chitlur just completed her term as an Invited member of the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC), and as Chair of the Learning Action Network of the Women and Girls with Blood Disorders Foundation (FWGBD). Dr. Chitlur has over 80 publications and 10 book chapters. Her clinical interests are in improving care for girls/persons with the propensity to menstruate and all patients with bleeding disorders and her research interest is in global hemostasis assays.



To Play or Not to Play, the Challenges of Managing Pediatric Hemophilia

Dr. Raj Bhardwaj: This season of DDx is sponsored by Sanofi. The case study you’re about to hear is a real patient story.

A young boy living in an orphanage in China is diagnosed with severe hemophilia. He is adopted into a family in the U.S. He desperately wants to play sports.

But his hemophilia hadn’t been well treated and there are big risks.

Dr. Meera Chitlur: We only have one brain, we can’t lose it, so I tell kids all the time, you know, the intention is to make sure that you don’t hurt all the important organs in your body.

Dr. Bhardwaj: This is DDx, a podcast from Figure 1 about how doctors think.

I’m Dr. Raj Bhardwaj.

This season, we’re taking you inside the minds of doctors who specialize in the most common type of hemophilia, Hemophilia A — an inherited bleeding disorder that prevents the blood from clotting properly.

Today’s case is from Dr. Meera Chitlur, a pediatric hematologist and the director of the Hemophilia Treatment Center at the Children’s Hospital of Michigan in Detroit.

Dr. Chitlur has been compensated by Sanofi for her participation in this episode.


Dr. Bhardwaj: One of Dr. Chitlur’s young patients left a strong impression on her the first time they met, about six years ago.

Dr. Chitlur: It’s very memorable to me. He’s a wonderful child. He was a little boy, 6 years old, very scared because, you know, obviously he couldn’t speak the language, he didn’t know these people, but he knew they took good care of him.

Dr. Bhardwaj: A family in Detroit had made the decision to adopt a child with hemophilia from an orphanage in China after seeing their friends do the same. They wanted to offer a child who didn’t have good access to treatment, a chance at a better quality of life.

Dr. Chitlur: When she met this child that her friend had adopted, she thought this was an opportunity to really help a child with a similar condition because she could see that the other child also had not received the care that he really should have.

Dr. Bhardwaj: When the 6-year-old boy came to Dr. Chitlur’s clinic, she could see that he hadn’t had access to proper treatment.

Dr. Chitlur: He had a swollen right ankle when he came to see us. So he was in a stroller, so that, just to prevent that ankle from getting any worse. And he has a lot of bleeds in that right ankle because his whole right leg was actually smaller than the left leg.

Dr. Bhardwaj: Multiple hemorrhages in a joint can cause a lot of pain. If the pain is in someone’s ankle, it becomes difficult to use that leg.

Dr. Chitlur: They put more weight on the other leg, so those muscles become stronger and bigger. It’s just like having a dominant hand, you know, how your dominant hand is always maybe a little bit bigger than your non-dominant hand. Similarly in this situation, his left leg became his dominant leg, and so his right leg was actually smaller. That tells me that this was not new. This was not a one-time bleed, that he had had this happen over and over again enough to actually cause his right leg to become atrophied as we call it.

So unfortunately, yes, even though the orphanage probably did their best, it wasn’t the best care. Not to blame anybody, but maybe that’s the resources they had to provide to this child.

Dr. Bhardwaj: Dr. Chitlur needed to come up with a treatment plan.

Dr. Chitlur: We had put him on what we call prophylaxis because his joints were so bad. We had to get to treatment right away.

Dr. Bhardwaj: She started to treat the young boy with intravenous infusions to help prevent further bleeding episodes.

Then there was a new challenge to take on.

Dr. Chitlur: All his older siblings, his brothers, play football and soccer. So he wanted to be as active as the family is. Everybody plays a sport in this family. And so he wanted to be part of that.

Dr. Bhardwaj: Dr. Chitlur didn’t want to discourage something that would help the boy fit in, but she also knew that with high-intensity physical activity, comes risk.

Dr. Chitlur: I think we want to avoid sports that have injury to the brain. We only have one brain, we can’t lose it, so I tell kids all the time, you know, the intention is to make sure that you don’t hurt all the important organs in your body. We don’t want chest trauma, abdominal trauma, head trauma, those are the kinds of things we want to avoid. Any sport that has a high risk for that, like football, for example, or lacrosse, or hockey, where people are smashing into walls or smashing into each other, the likelihood of having an injury to your head, neck, chest, or belly is very high.

Dr. Bhardwaj: Dr. Chitlur also wants her patients to keep in mind that injuries to joints can have a major impact on quality of life, even if they are not life threatening. So she had a conversation with her young patient.

Dr. Chitlur: He realized that we can’t say yes to football, and soccer was difficult because he had bad ankles.

So he decided he loves basketball because they played that a lot outside the house, you know, the siblings would play together and he loved the sport. And so he really wanted to be able to do this beyond just the basketball hoop outside their house. And so he decided he wants to play this at school.

Dr. Bhardwaj: When they settled on basketball, Dr. Chitlur, the child, and his parents worked out a new plan to keep him as safe as possible from injuries.

Dr. Chitlur: So we had to then sit down and have a conversation. What does this mean for you? You know, how do we make sure that you can play safely? Do we know that your ankles can tolerate this kind of a sport?

Dr. Bhardwaj: It was trial and error. Some weeks that meant extra intravenous treatments.

Dr. Chitlur: There’s no one-size-fits-all answer for these kids. I’ve had lots of conversations with him, and I’ve said that you know, we’re going to do this, you’re going to treat every time before you go out and play, so if you have practice on Wednesday and Friday, that means that you treat on Wednesday morning and Friday morning, or you treat on Tuesday and Thursday, so that you can play on Wednesday and Friday.

Dr. Bhardwaj: It also meant taking breaks from playing.

Dr. Chitlur: Sometimes it would mean he missed practice or missed a game. And, but he is smart enough and the family is good enough that they can, you know, they make the right choices. They say, you know what, today is not a good day. We just can’t play today.

Dr. Bhardwaj: Then there was a particularly difficult time when injuries to the boy’s ankles meant multiple intravenous treatments — up to four or five a week.

Dr. Chitlur: And it became a lot for him, as well as the parents, and you know, he started having issues with finding a vein because they were poking so much. And so then it became a problem.

Dr. Bhardwaj: Dr. Chitlur decided her patient needed some extended time away from basketball to give his joints a chance to recover.

Her next step was to add a newer medicine that could be given by a simple subcutaneous injection rather than an IV infusion. He would still need some extra protection with his regular IV infusions, to lower the chance of serious hemorrhaging if he was injured.

Dr. Chitlur also decided to add physical therapy to protect the boy’s ankles from further injuries.

Dr. Chitlur: Our physical therapist recommended that he wear braces and that he has to wear a certain kind of shoe, probably something that has a high top, so that those ankles are a little more protected. To this day, he wears braces because he knows that if he goes out and plays without the braces, then he’s going to come home with a bleed. And that really has made a difference for this child.

Dr. Bhardwaj: As much as possible, Dr. Chitlur involves the child in conversations about treatment. Getting his buy-in was key to helping him play basketball safely.

Dr. Chitlur: We don’t give children enough credit as to how much they understand. You know, because if you just talk to the parents and send the kid home, they’re not going to listen. Kids are kids. You know, they go out and play. They hurt themselves again. And then you sit down and have another conversation and say, see, this is what we didn’t want to happen. So next time maybe we won’t do it this way. So that you can make sure that you’re all better before you go out and play.   

Dr. Bhardwaj: That little 6 year old who was in a stroller the first time Dr. Chitlur met him, is now 12 years old. The treatments he’s on are working.

Dr. Chitlur: He’s doing so well. Actually, he’s doing really, really well. I’m so happy for him. He’s doing very well at school. He’s also playing basketball now. He hasn’t really had any major bleeds. It has given him a lot of self-confidence.

Dr. Bhardwaj: She says the direction new treatments are taking in hemophilia are giving kids a shot at a normal childhood. Something that wasn’t possible until recently.

Dr. Chitlur: I feel like for a long time we didn’t have very many options, so we couldn’t think like this. It was not even practical to think like this.

But now we have such wonderful medications, that allows us to be able to think that they can be normal, quote unquote, you know, so they can have a normal quality of life, they can enjoy life like their friends do. And so that’s really important.


Dr. Bhardwaj: When it comes to treating patients with hemophilia who play high intensity sports, it’s important to think about the levels of clotting factor a patient might need, when formulating a treatment plan.

Dr. Chitlur: We know that normal people have factor VIII (8) activities somewhere in the 100 and 150% range. Whereas a person with hemophilia can have less than 1% without treatment.

And if you take treatment, we are probably bringing you, we are aiming to bring you closer to 100% or 50%, depending on how much factor you’re getting.

And so we know that patients who engage in high-impact physical activity may require levels to be as close to 100% as possible, in order to prevent major bleeding.

Dr. Bhardwaj: People with hemophilia are living longer, thanks to continuous improvements in treatment. That means they can run into the same health issues that other adults have as they grow older.

Dr. Chitlur: They can all get diabetes, they can all become overweight, they can all have cholesterol issues, they can all have heart attacks.

Dr. Bhardwaj: Managing those conditions is more tricky in someone with hemophilia.

Dr. Chitlur: So encouraging physical activity so that they can maintain bone health, muscle health, cardiovascular health, is just as important in our patients with bleeding disorders as it is in those who don’t have bleeding disorders.

So gone are the days when we used to say that you have hemophilia, you cannot do exercise and you can’t do this, that, or everything else. So now you can. You just need to make sure that you take the precautions, get the treatment like you should, and you should be able to exercise and maintain a normal and healthy lifestyle.

Dr. Bhardwaj: Thanks for speaking with us Dr. Chitlur.

This is DDx, a podcast by Figure 1.

Figure 1 is an app that lets doctors share clinical images and knowledge about difficult to diagnose cases.

I’m Dr. Raj Bhardwaj, host and story editor of DDx.

Head over to, where you can find full show notes, photos and speaker bios.

This season of DDx is sponsored by Sanofi.

Sanofi is a global healthcare company that develops and delivers medicines and vaccines for millions of people around the world.

Thanks for listening!