Before your child's visit
Before your child’s first visit to the Center for Cornelia de Lange Syndrome and Related Diagnoses, you will be asked to send:
- Your child’s medical records
- Photos of your child
- Your child’s insurance information.
At your child's visit
During your child’s visit your child will be evaluated by:
- A geneticist
- A gastroenterologist
- A developmental pediatrician
- A physical therapist
Based on your child’s needs, we will schedule appointments with other specialists. These specialists will be from other areas of medicine, including:
- Others as needed
In all, you should expect to spend at least one half day at The Children’s Hospital of Philadelphia; however, depending on the number of additional specialists your child is scheduled to see, your visit may be longer and can last several days.
Where to stay
After your child's visit
After your child’s visit, our multidisciplinary team of experts will discuss your child’s needs and develop a comprehensive care plan that will be provided to you and your child’s caregivers.
You will be given a “Take Good Care of Me!” booklet with a summary of your child’s clinical issues and medical needs to share with doctors and other health professionals. This booklet will educate them about your child’s unique needs, in order to provide safer and more effective treatment.
In addition, we will give you a Care Binder — a special tool for families who have children with complex, multi-system disorders. The Care Binder is a way to help you organize all of your child’s important paperwork, including test results, doctors’ reports, insurance paperwork and educational information, among others.
Number of visits
If you live far away from Philadelphia, your family will likely only need to visit CHOP’s Center for Cornelia de Lange Syndrome and Related Diagnoses once.
After your child’s complete evaluation, we will provide you with a written care plan to share with your child’s regular pediatrician and specialists. We encourage you to keep in touch with us by phone or e-mail, and to visit again if your child’s condition changes.
If your family live nearby to CHOP, we may see you and your child more frequently. We will work with you and your child’s doctors to make ensure your child’s care remains consistent and appropriate, and is improving your child’s life.