When son Dorian was born, DeMario and LaShawnda Wiley didn’t expect to wind up at Children’s of Alabama. But when a routine test for sickle cell disease came back positive five days after Dorian’s birth, the Wileys arrived at the first of many appointments at Children’s Hematology/Oncology Specialty Care Clinic.
Dorian’s clinic appointments, initially scheduled quarterly, were critical in monitoring his blood count levels. The appointments also helped the Wileys better understand sickle cell disease and how they could best care for Dorian.
“Everyone at the clinic did a great job of making sure we understood exactly what was going on with Dorian,” DeMario said. “While his mom is a nurse and had some understanding of the disease, it was completely new to me. They shared educational videos with us and helped us prepare for how to help Dorian and what to look for.”
For the first few months, Dorian’s blood count levels were in the normal range. But at age 7 months, Dorian experienced a splenic sequestration crisis — an illness common in pediatric patients with sickle cell disease when sickled red blood cells become trapped in the spleen. The spleen can enlarge, get damaged and not function as it should.
“It was an incredibly scary situation,” DeMario said. “Dorian was hospitalized for over a week and at one point he had to be on a ventilator.”
Dorian’s doctors knew he would need a splenectomy to prevent another sequestration, but surgery had to wait until he was 2 years old. In the meantime, Dorian began monthly blood transfusions until the surgery was performed.
“That was obviously a hard time because it’s hard to watch your baby go through a transfusion every month,” LaShawnda said. “What helped us during that time was that a close family friend was able to become his blood donor. That gave us reassurance and comfort because we knew exactly where his blood was coming from each month.”
Dorian made it to age 2 with no further complications and the splenectomy was successful. Since then, Dorian, now age 11, has returned to quarterly clinic appointments to monitor his blood count levels.
“Children’s is obviously great with the kids, but they also take care of the parents,” DeMario said. They are so knowledgeable and willing to help with whatever you need during times that can really be trying. Our experience each time we go is great.”