Sickle Cell Disease
What to Expect

What to Expect at Your First Appointment at the Comprehensive Sickle Cell Center

The Cincinnati Children's sickle cell disease program begins at diagnosis. Most children are diagnosed shortly after birth, and your child's first appointment will usually take place when they are about 2 months old. The purpose of this visit is for you and your child to meet our care team and begin a treatment plan. We also want to make sure you know about the complications of sickle cell disease and what precautions you need to take.

The best way to treat sickle cell disease is through careful monitoring, usually with appointments every six months or yearly. We will evaluate your child to determine what steps we need to take right away, and what can wait.

Making an Appointment at the Comprehensive Sickle Cell Center

We want it to be easy for you to get the care your child needs. You can contact us directly to schedule an appointment. Or, your child's pediatrician or provider can refer your child to our center. We also take referrals from the emergency department and other hospitals.

Before Your Appointment

A nurse will contact you before your child's appointment to prepare for the upcoming visit. During this call, we will:

  • Gather information about symptoms, health history and past treatments.
  • Collect past test results and medical records (We'll provide instructions on how to share this information with us.).
  • Provide pre-visit instructions.

During this call, we can also answer questions you have before your child's visit. Of course, you're welcome to call any time before or after your child's visit.

On the Day of Your Visit to the Comprehensive Sickle Cell Center

Arriving At Your Appointment

You will need to arrive about 30 minutes before your child's appointment — 15 minutes to park and walk to our clinic and 15 minutes to check in at our registration desk.

If you are running late, please contact us.

At Your Appointment

During this first visit, our care team will spend a lot of time getting to know you and your child and sharing information about sickle cell disease. We will be talking about interventions your child may need in the future, including imaging tests, medication and blood transfusions. We understand it can be overwhelming, so we will give you plenty of resources you can look over on your own. A sickle cell disease diagnosis can be difficult to comprehend, and we are here to help throughout your journey.

After Your Visit to the Comprehensive Sickle Cell Center

You will receive an "After Visit Summary" at the end of your appointment, which includes important information about upcoming appointments, test results, referrals to specialists, and all medications (including new prescriptions). It will also include contact information for your child's care team.