William “Will” Arbour is an active 10-year-old who loves fishing and roasting s’mores over the fire. He’s also had to overcome more health challenges than most adults do in their entire lives. Will has moderate hemophilia A, a bleeding disorder that affects his blood’s ability to clot. He was also born with hypoplastic left heart syndrome, a severe congenital heart defect in which the left side of the heart is underdeveloped. Early in his life, he endured three open-heart surgeries to repair the defect—no small feat for a patient with a bleeding disorder. “We were so unaware of how that was going to work,” says his mom, Becky.
In March 2024, Will saw the Children’s Wisconsin heart failure team, who noticed that he was experiencing Fontan circulatory failure, raising concerns that blood clots might develop, as well as life-threatening bleeding complications due to his hemophilia A. Children’s Wisconsin immediately sought help from Versiti Comprehensive Center for Bleeding Disorders (CCBD), a federally designated hemophilia treatment center. CCBD Senior Medical Director Lynn Malec, MD, MSc, immediately jumped into action.
“The unknown was very scary, but Dr. Malec and the team put my fears aside quickly,” Becky says. “I could tell they knew what they were doing. I felt reassured that they could handle anything that came to us, and they were going to take care of Will to the best of their ability.”
During this time, Will was diagnosed with heart failure and added to the heart transplant waiting list on June 6, 2024. “July 10, we got the call that they had a heart. We thought it could be a year,” Becky says. “We talked to him and tried to prepare him for this, but there was no preparing—it went really fast.”
Dr. Malec collaborated with Will’s many care teams and national experts, all of whom affirmed this was the first case of its kind. Despite the challenges and risks that lay ahead, Becky knew Will was in good hands.
“Everything that could have gone wrong—there was a lot they prepared for,” she says. “They had a plan. If that plan didn’t work, they had another plan. There were a lot of ways this could go, with his bleeding disorder and his heart on top of that. Dr. Malec really helped put my mind at ease. I knew if something didn’t go right, she had a plan.”
Thankfully, Will’s transplant surgery was a success, and he is on the road to recovery. “We live in Michigan, so we have our own team here. But because we go to Milwaukee for transplant visits, we’ll be staying with Dr. Malec and her team, because they know Will best,” Becky says. “Through all this, they’ve been there every step of the way. They’re just amazing.”
Versiti is home to world-renowned blood health innovators.
Versiti Blood Research Institute and Medical Sciences Institute are located on the Milwaukee Regional Medical Center campus in Wauwatosa, Wisc. Their 40 investigators are internationally known blood health innovators whose work spans basic, translational and clinical research in a variety of areas, including: sickle cell disease, hemophilia, cellular therapy and many more.
Additionally, Versiti Comprehensive Center for Bleeding Disorders (CCBD) provides diagnosis and ongoing medical and supportive care for patients with disorders that affect bleeding and clotting. Physicians work closely with these patients and are able to take what they learn in the clinical setting to the lab, where they partner with basic researchers to develop innovative treatments.