As a Designated Center of Excellence, We Provide Innovative Therapies and Hope to Families

Sickle cell disease (SCD) is a genetic condition that affects more than 2,000 newborn children in the U.S. every year. Children with SCD face a lifelong serious condition, one that affects hemoglobin – the molecule in red blood cells that delivers oxygen to cells throughout the body. The disease can cause severe pain and potential organ damage, and severely impact a child’s quality of life.

Valley Children’s has the third largest SCD program in California, and in 2023, was designated a Center of Excellence – one of just four hospitals in the state to receive this distinction. This means our SCD patients can benefit from newly approved therapies and clinical trials available only to select hospitals.

One of those therapies is red cell apheresis, an advanced treatment option that helps to mitigate the symptoms of SCD, reducing the risk of complications and hospital visits and enabling patients to live fuller, healthier lives.

“To be at the forefront of such medical advancements is a tremendous privilege,” said Dr. Bindu Sathi, Valley Children’s pediatric oncologist/hematologist and SCD Program Director. “Through shared insights and data with other centers in the State and across the country, we are able to continually drive momentum that is paving the way for life-saving treatment available to sickle patients.”

Cutting-Edge Treatment Closer to Home

Red cell apheresis treatments are facilitated by an apheresis machine that allows for efficient red blood cell exchange. It removes abnormal blood cells and replaces them with healthy ones from a donor.

And while the availability of red cell apheresis therapy offers hope to SCD patients, it’s hard to come by. Before Valley Children’s received the Center of Excellence designation and received the apheresis machine, patients had to travel long distances every month for treatments or make do with other options. Now they can receive apheresis treatment close to home.

One of Valley Children’s patients benefiting from red cell apheresis is 17-year-old Demetrius Arnold, who attends high school in Modesto. When he was adopted at the age of three, Demetrius and his parents, Melvin and Gina Arnold, were eager to find him the best possible care. Fortunately, they live just a short drive from Valley Children’s, which means they don’t have to go far to benefit from advanced medical care.

“Receiving the treatment is an all-day event, and a nurse must be present throughout the entire process,” Melvin said, adding that he and Demetrius have gotten to know the staff in the SCD program at Valley Children’s very well. “As we learned more and became familiar with the doctors and staff who are taking care of Demetrius, we have fallen in love with Valley Children’s,” Melvin said.

Apheresis Treatment Reduces Complications and Hospital Stays

Demetrius experienced many ups and downs throughout his care journey, including numerous hospital stays as a result of sickle cell crisis episodes – a common plight for SCD patients.

“A good year for Demetrius would be two to three hospitalizations, and in a bad year, there would be five to seven,” Melvin said. “One year he developed pneumonia in both lungs and had to be put into an induced coma. We nearly lost him, and he was in intensive care for about six weeks.”

Access to red cell apheresis therapy has changed that by drastically reducing the number of hospital stays resulting from SCD complications. In fact, since launching the program, Valley Children’s admission rates for patients experiencing a sickle cell crisis have decreased by 100%.

“Since Demetrius started apheresis therapy four years ago at Valley Children’s, he has only had to be hospitalized twice,” Melvin said. “Receiving the treatment has also been extremely effective in helping him manage his symptoms on a day-to-day basis, as well.”

Valley Children’s comprehensive care approach for SCD patients involves a dedicated social work team, nurse navigators, skilled nurses, rehabilitation specialists, and pulmonologists who coordinate to address the needs of individuals with SCD at every stage of life. The team implements best practices and a standard for administering the therapy, including administering apheresis with a single needle.

Such collaboration, said Dr. Sathi, is at the heart of the program’s success and enables a comprehensive and streamlined healthcare experience.

Improving Quality of Life – for Life

These days, Demetrius is proactive about his health. While being treated at Valley Children’s, he has learned about healthy habits he can maintain to mitigate his symptoms.

“Before I started the apheresis treatment, every little thing would make me winded,” he said. “Now I am breathing better and I have a lot more energy. Even when I have some pain, I usually don’t need to go to the hospital because I can manage it at home.”

With his SCD now under control, Demetrius can focus on his future, work on achieving his goal of becoming a pastor, and help other people live their lives to the fullest.

“The ability to benefit from the best possible care at Valley Children’s means fewer hospitalizations, less stress on Demetrius and our family and more time together to enjoy life.”

Melvin, Demetrius’ dad