Brothers Kyle and Kayden manage their hemophilia diagnosis together

In 2014 when Kyle Sylve was just seven months old, his mother, Shacari, noticed something concerning—a few unexplained bruises on his legs. She took her baby to their local pediatrician in Ponchatoula, LA., where Kyle underwent a battery of tests, but the visit didn’t lead to a definitive diagnosis.  

Shacari was really worried and when the local physician suggested she take Kyle to Children’s Hospital New Orleans (CHNOLA), she said she couldn’t drive the hour fast enough. It took one visit to CHNOLA’s Emergency Department and some tests to reveal Kyle’s diagnosis – severe hemophilia B or factor 9 deficiency, a rare bleeding condition that makes a person’s blood unable to clot properly. Hemophilia is usually hereditary, although Shacari, now 30, did not know she was a carrier until shortly after Kyle was diagnosed. 

About two years later in early 2016, Shacari gave birth to her second son, Kayden, now 8, and was prepared for the possibility that he would also test positive for hemophilia. Pediatric hematologist and Medical Director at the Hemophilia Treatment Center and the Hemophilia, Bleeding Disorders and Thrombophilia Program, Maria Velez, MD, who had been treating Kyle, ordered testing for his newborn brother immediately. When he tested positive, Kayden joined his brother in Dr. Velez’s care. 

“I appreciated how proactive she was and that we were able to catch it early,” Shacari said.“I love Dr. Velez and would never change doctors. She has been there from the very beginning with both of my boys, and, along with her nurse navigator and educator Claudette Vicks, they keep up to make sure the meds are working,” Shacari said. “Dr. Velez is so good with my boys, so friendly. They both like her, and they don’t give me a hard time when we have to go for a visit. In fact, they prefer to go to the doctor than to go to school!” 

One blessing they received after the diagnosis was that Kyle was given the opportunity to take part in a clinical trial for a new medication. The drug, Rebinyn, subsequently was approved by the U.S. Food and Drug Administration in 2018. Kyle continues to take the medication weekly and checks in with Dr. Velez every six months. 

Kyle is one of many children who have been lucky enough to participate in a clinical trial at CHNOLA. In fact, the Children's Hospital New Orleans Clinical Trials Program is a “nationally recognized institution committed to advancing pediatric care through innovative research and clinical trials.” 

However, Kayden was unable to participate in the clinical trial as he has hemophilia with inhibitors – a complication that makes it more difficult to stop bleeding. He has taken a variety of medications during his young life and currently is doing well. 

Shacari and her mom viewed every piece of information as more education they could use to care for the boys. “Throughout the whole process, I felt very overwhelmed. But my parents - my family - were there to help me through the process,” Shacari said. “I would be in the hospital with one and the other was at home with my family. And the doctors and nurses at Children’s were unbelievably helpful. The care at Children’s has always been top notch. They are so on top of things. Anything we needed, they made sure we had it. When we had to stay in the hospital, they made every stay comfortable,” Shacari continued. “I had questions, my mom had questions. They answered every single one. I really felt like my boys were being taken care of so well.” 

Shacari gave up her job working at a local hospital so she could take a position with more flexibility - because “you never know.” But right now, Kyle and Kayden are in second and fourth grade and are doing very well in school.  

“Sure, they have some things they can’t do. They aren’t allowed to play on the trampoline, but they can play non-contact sports like basketball. They could run track if they wanted to someday. And they love their video games and sitting on the couch, which is safe,” Shacari said laughing. 

The boys understand they will have to be on medication for the rest of their lives but, as mom says, “they roll with the punches and are used to it now.” 

Hemophilia doesn’t stop Kayden from eating the pizza and red beans he loves. And Kyle, will never say “no” to a Nutella & Go snack. 

“When I think about the future, I wish this would all go away – no more medicine, no more doctors,” Shacari said. “But the reality is that I’m looking forward to the day when the boys are able to manage their medicines. All I really want is for them to live happy, productive lives.” 

To learn more about hematology services at Children’s Hospital New Orleans, please visit: https://www.chnola.org/services/hematology-oncology/hematology-services/