Find inspirational stories from hemophilia B
patients in the B the Inspiration series.
I think it's very important to find a balance between keeping him safe and letting Yadir just be Yadir.”
Tell us a little about yourself.
My name is Cristina. My 3-year-old-son, Yadir, has severe hemophilia B. We live in West Allis, Wisconsin, pretty close to Milwaukee. I live with my two other children, Marissa, who is 11, and Moises, who is 5; my partner of 7 years, Francisco; and our dog, PowPow. I just recently graduated with an associates degree in Computer Support and Networking Administration, and Francisco works in a warehouse.
I'm here to talk about my experience raising a child with hemophilia, and becoming involved with the hemophilia community.
Does your family have a history of hemophilia B?
Two of my nephews who live close by have hemophilia, and my niece is a carrier. Because of them, I thought to get my sons tested for the hemophilia gene while I was still pregnant with them. Moises didn't have it, but Yadir did test positive for it.
When he was born, he had two hematomas on the right side of his head. He received his first treatment before we even left the hospital. He probably should have stayed in the hospital, but was discharged soon after birth. While the doctors told us that Yadir's hematoma would be getting better, it actually got worse. When we brought him back to the hospital, he was treated again and the hematoma finally went down.
How do you get such a young child to understand his hemophilia?
Yadir is young and seems to accept that infusions are something he needs, but he doesn't really get it. To help with the infusions at home, I got a teddy bear that has a mediport, too. We do a pretend infusion on the teddy, and Yadir knows that once we're done with the teddy, it's his turn.
Yadir's worst bleed was just this past June. It took more than 3 months for him to heal fully.
One morning, he woke up with his cheek swollen. It just looked like he slept on it, and it was a little puffy; there wasn't any bruising, and he wasn't in pain. It didn't really change until a few weeks later when the swelling got so much worse. I took him to the hospital, and it ended up being a huge bleed. We don't really know how it happened. His crib is padded, but we think that maybe he bumped into it too hard.
Yadir is a very active child. I try my hardest to make him aware of his surroundings and keep him safe. I bought him kneepads, but like any other 3-year-old would do, he rips them off after about 2 minutes.
Making him wear more cushioning clothes or more padding seems to work better than the kneepads, and I am always keeping an eye on him. I also try to put padding in areas around the house where he might get hurt. He's pretty clumsy, even for a 3-year-old.
When he gets a bleed, he cries a little or says "Ow," and then gets over it. He knows there's something wrong, but I don't think he understands it quite yet. He won't really connect until he's older.
Once he's old enough, I'd like him to go to hemophilia camp, so he can really start to understand.
Tell us about your treatment journey.
From the time he was born, Yadir was treated on demand. He was getting poked a lot. Because his veins were so small, this was a big problem. He had a PICC line put in when he was less than 2 months old. About a month later, the PICC line got infected, so it was removed, and he continued to be treated at the hospital for all his infusions.
Thankfully, he was always pretty cooperative. I found this to be strange for an infant who was constantly getting stuck with needles, but it was a blessing. He seems to have a very high tolerance—he never really squirmed or cried when it was time for his infusions.
When Yadir was just over a year old, he had a port put in. After a while, the nurses taught me how to infuse through the port. I had seen it done many times for Yadir and my nephews, but it was good to be taught how to do it correctly. Yadir kept that port for a very long time.
In September, Yadir was started on RIXUBIS. At the same time, Yadir's doctors suggested that we try to get rid of the port since he's young and handles infusions well. RIXUBIS seemed to fit with our lifestyle.
I feel like it was the right decision to change Yadir's treatment. He is on a prophylactic regimen. We infuse twice a week.
Until recently, we've been seeing Yadir's hematologist approximately every 6 months. When we go to the HTC, the doctors and nurses do a general checkup, check in on how an old bleed is doing, and do blood work. They are very good about answering all my questions.
Because Yadir has been especially clumsy, the doctors want to see him more often, so we have been going to the HTC about every month.
How does Yadir's diagnosis influence the day to day of your family life?
It's definitely a challenge to get three kids ready for school and out the door in the morning. I struggled with the scheduling at first, but now I have an alarm that goes off the night before to remind me to set everything up. This way, in the morning while I'm getting the kids ready for school, I can mix and do the infusion.
RIXUBIS seems to work well for Yadir. At this point, Yadir is having less bleeds than he was. RIXUBIS seems to help prevent bleeds for Yadir, and the bleeds also seem to resolve effectively. Having fewer bleeds helps Yadir, and I can worry a little less, too.
Sometimes I worry that my other children don't like that Yadir gets all this extra attention. My daughter, Marissa, is very helpful with Yadir. Moises is only 5, so we don't expect him to understand this as well as Marissa, but he is also somewhat special needs and has a hard time putting things together. We try to give the kids their own special days so they don't feel like they're getting less attention than Yadir.
It's scary sometimes, too, always having to be on call. No matter what time of day it is, Yadir could need my help. It's really exhausting sometimes, but it's just something I have to do.
How do you balance letting Yadir being a kid with keeping him healthy?
I don't want Yadir to feel defined by hemophilia. He has it, and it's going to be a part of his life forever, but I don't want to let it stop him from living his life. I think it's very important to find a balance between keeping him safe and letting Yadir just be Yadir.
Yadir really likes to run, and he's learning to ride a bike now. During the summer, we like to play outside with the family and take walks. In the winter, we do a lot more reading.
Compared with my nephews who also have hemophilia and have always been less active than Yadir, I think that Yadir benefits from all his exercise. He's a little chubby, but that's just baby fat.
He also likes to eat healthy—surprising for a 3-year-old, I know. He actually really loves salad. That's what he wants at home and even when we go out to eat. Eating healthy food is setting up a great foundation for his eating habits for the rest of his life.
I like to get together with some of the other moms in the area who also have children with hemophilia. Sometimes we go get breakfast. No matter what we do, it's just helpful to be able to talk out our problems and share our experiences. I've also gone to a few of the hemophilia community walks, as well as educational events and conferences. I like to do my research and know as much as I possibly can about Yadir's condition.
It's great to not feel alone in this. Having support within a community of people who understand is so much more helpful than I would have imagined. For parents who are new to this, it's also nice to get involved because then you find out that you and your child can learn to manage. Raising a child with hemophilia is constantly a learning process, but it's easier to get through with people who support you.
Having a child with hemophilia has caused me to become a stronger and better person. I'm more passionate and more outspoken. This will likely change when Yadir gets older, but right now he cannot speak up for himself. I am his advocate, and I can stand up for what I believe in and what I believe he deserves. When I found out that Yadir had hemophilia, my first thought was honestly, “Oh my god what am I going to do?” As I have discovered, it is manageable. Having support from others has helped me realize that I can do more than I thought I could.
Not all activities are appropriate for all people. Consult with your healthcare provider to determine which activities are appropriate for you.