What to Expect from the Outpatient CDH Program
After your baby returns home, you continue to see your congenital diaphragmatic hernia (CDH) care team at our Outpatient CDH Program. We care for babies with CDH every day. We know how to manage this complex condition, its complications, and related conditions.
Since 2004, the experts at our Fetal Care Center have performed more than 400 prenatal evaluations for CDH. Our surgeons have performed more than 50 fetoscopic endoluminal tracheal occlusion (FETO) procedures.
We combine our knowledge of caring for CDH babies with research. In this way, we offer your baby innovative and effective therapies throughout their lifetime.
If you live far away, we work with your local pediatrician to manage your child’s care.
Making an Appointment with the Outpatient CDH Program
We understand that managing your child’s care can be overwhelming. If you are an existing patient, your CDH nurse coordinator schedules an appointment for you.
Pediatricians and specialty doctors refer patients to us. Parents can contact us directly by calling or by completing a self-referral form.
Before your visit, a nurse coordinator will contact you. During this call, the nurse will:
- Share what to expect during the appointment, including the doctors your child will see
- Collect information about your child’s medical history and treatments
- Schedule any needed tests
- Answer any questions you may have
Before Your Appointment
Complete any scheduled tests, and be sure to bring your insurance card with you. We recommend bringing favorite snacks or drinks your child or family will enjoy.
On the Day of Your Visit with the Outpatient CDH Program
Arriving at Your Appointment
Please arrive 15 minutes before your appointment, giving you time to park and walk to our location. If you are running late, please call and let us know.
At Your Appointment
We strive to make your appointment with us as easy and stress-free as possible. We provide activities, games, and snacks to help your child pass the time during your visit. Our exam rooms are wheelchair accessible, making it easy to get in and out.
You can expect this appointment to take between three and four hours. You will meet with several members of your baby’s care team. We will review your child’s health history and perform a physical exam.
Depending on your child’s needs, you may meet with the following pediatric specialists:
- Cardiologist
- Developmental pediatrician
- Neurologist
- Occupational therapist
- Pharmacist
- Physical therapist
- Pulmonologist
- Registered dietitian
- Respiratory therapist
- Speech therapist
- Social worker
- Nurse coordinator
- Clinical care researcher
Each provider comes to the exam room to meet with you and your child. You may be asked to take part in research studies or clinical trials. Participation is voluntary.
After Your Appointment with the Outpatient CDH Program
At the end of your appointment, we give you an “After Visit Summary.” It includes information about upcoming appointments or tests. We also provide contact information for each specialist on your child’s care team.
Your CDH nurse coordinator works with your child’s schedule for follow-up care. The coordinator answers any questions you have about your child’s care plan and connects you with necessary resources.
If you have concerns or questions between visits, you can contact your nurse coordinator.
