CHARGE Syndrome | About Your Visit

How the CHARGE Center Works

When you contact us, a nurse coordinator will discuss your child’s previous care and arrange to have medical records forwarded to the center.

Once the necessary information has been gathered, all the specialists on the CHARGE team meet to review your child’s case and, together, develop a plan of action.

The nurse coordinator will then confer with your family to arrange a visit. During this visit, your child may be seen by multiple caregivers who have reviewed the records and are familiar with the medical needs of children with CHARGE syndrome.

Results of these examinations and any new testing are then relayed to you, your primary care provider and the team for further review and action as needed.  

Throughout this process, you may contact our nurse coordinator if you have questions. You also may arrange for findings to be sent to your child’s primary physician, if you wish.

What to Expect At Your First Visit

Each family’s experience with the CHARGE Center at Cincinnati Children’s is uniquely tailored to meet the needs of that family and their child. Through careful planning, we help you navigate the system for a visit that proceeds as smoothly and efficiently as possible.

As you know, CHARGE syndrome can take on many forms and affect many different parts of the body. No two children are alike. By the time your family comes to our facility, our nurse coordinator has spoken with you and gathered as much information about your child as possible, and has presented what she knows to our CHARGE experts. These team members, in turn, have reviewed your child’s records and determined what they believe to be the best course of action. They have sorted out which specialists are likely to help your child the most, and what testing will clarify your child’s needs and next steps.

After discussing with you what sort of timing makes sense for your family, the nurse coordinator will create an itinerary of appointments for your child at Cincinnati Children’s. A lot of thought goes into sequencing these tests and specialist visits in a logical order, to minimize risk and stress as much as possible. For instance, if multiple specialists require examinations under anesthesia, we try to coordinate these examinations so your child is under anesthesia only once.

When you arrive at Cincinnati Children’s, you will follow the itinerary you have been given. Because there is no physical CHARGE clinic, our nurse coordinator will stop by at one of your first appointments, to make sure things are going smoothly and to answer any questions you might have. Our team of providers will share their thoughts about your child’s needs and care as you go through the process. Additionally, we will meet as a team in order to ensure we are working together and provide a cohesive plan. The nurse coordinator will call you to discuss group recommendations and the next steps.

Frequently Asked Questions

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 subspeciality 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.

Below are some resources for families:

A CHARGE patient with his mother.

Contact Us

Contact us.
For more information, or to make an appointment or referral, call the CHARGE Center nurse coordinator at 513-636-2518 or complete our online contact form.

Everett's Story

CHARGE patient Everett.
Kami Patrick felt like she wasn’t being listened to before she came to Cincinnati Children’s. Her 3-year-old son, Everett, has CHARGE syndrome. > READ EVERETT'S STORY