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.