CHARGE Syndrome
What to Expect

What to Expect at Your First Visit with the CHARGE Center

The CHARGE Center is not a physical office in our building, but rather a virtual center that exists to make your life easier. Our nurse coordinator works with a wide variety of clinicians for a multidisciplinary approach to caring for your child. Each of these specialists treats different aspects of your child's health. They work together to ensure your child receives the care they need.

When your child is diagnosed with CHARGE syndrome, it can be overwhelming to think about all the different aspects of their care. Our goal is to manage your schedule so your family has an easier transition from appointment to appointment.

Making an Appointment

We want it to be easy for you to get the care you or your child needs. You can contact us directly to make an appointment. We also accept referrals from pediatricians, neonatologists, emergency room physicians and other providers.

Before Your First Visit

Once a referral is made, our nurse coordinator will contact you to discuss your child’s previous care and arrange to have medical records sent to us. Next, the nurse coordinator will contact you to schedule your child's assessment.

Please be aware that it may be several months between your first contact with us and your child’s first appointment. During this time, we gather all the necessary information, and our specialists review your child's case to determine the best plan of action.

If you're traveling from out of town, our nurse coordinator will help you make arrangements for staying overnight, since the assessment requires several days of outpatient visits.

During Your Visit

Arriving At Your First Appointment

Your child will have multiple appointments each day of your visit. We’ll give you the itinerary in advance, so you’ll know where to arrive for your first appointment on the first day.

At Your Appointments

Our team takes great care in planning out your child's visit to minimize stress. Our providers will share their thoughts as you move from specialist to specialist, and we'll make sure you know exactly where you're going next.

Most assessments take three to four days, usually Monday through Thursday. This busy time will include outpatient visits with multiple specialists in their offices, as well as time in the operating room. These procedures will help us learn specifics about your child's condition. The specialists from all areas caring for your child will meet to discuss what they learn throughout the week and determine the best possible intervention for your child. We'll discuss the treatment plan with you during your visit.

After Your Visit

You will receive an "After Visit Summary" at the end of every appointment with each provider. The summaries will include important details about your child's test results, referrals to specialists, and medications (including new prescriptions). It also will include contact information for your child's care team.

A nurse will discuss with you all recommendations for your child's ongoing care. As the child's parent, you're an important part of the care team, and you'll be able to make decisions about next steps. If you live outside Cincinnati, some or all of your child's needs may be met by providers in your hometown. Or you may choose to return to Cincinnati Children's for your child's interventions and follow-up care.

Frequently Asked Questions

The CHARGE Center will step in and assist with the planning and scheduling for you.
You may be hesitant to add yet another caregiver to your long list. Be assured, once you understand that our main function is to lighten your load and help arrange and keep track of all the specialist visits, testing, results and so forth, you’ll be glad you did.

Having all the services you could possibly need in one place means fewer trips to the hospital and outpatient clinics. Furthermore, our caregivers work as a team to make sure you receive consistent advice and that details do not fall by the wayside.

Coordination also means we perform visits, testing and evaluations in a sensible sequence, minimize risk by consolidating anesthesia events and blood draws.

The CHARGE Center is a virtual center; there is no physical office with a sign on the door. Rather, it includes a diverse group of clinicians working in many areas of the hospital. Our nurse coordinator is available by phone and by email to answer questions and help with the logistics of caring for your child with CHARGE. We want you to think of this as your subspecialty home base, from which we promise to look after you and your family.
CHARGE syndrome is uncommon, occurring in only one out of 9,000 to 10,000 births. Because of this, it can be hard to find providers who have seen children with CHARGE syndrome. Our clinicians have specific knowledge of CHARGE syndrome. Everyone on our team is very familiar with CHARGE syndrome and has significant experience taking care of patients with CHARGE .Not only are these experts prepared to help your child in the short term, but they can also discuss future needs to help you plan for life transitions down the road.
The short answer to this question is, a lot. We make recommendations, but the final decision on what is to be done always rests with the family. Our goal is to understand your child’s current needs and your priorities about your child’s medical and developmental care. At the CHARGE Center, we want to make sure you understand the options, along with their pros and cons, so that you can feel comfortable with the chosen treatment plan.