What to Expect at Your First Appointment at the Pediatric Intestinal Transplant Program
As part of our proactive and collaborative approach to the care of children with intestinal failure, we work as a team to seamlessly evaluate for and offer intestinal transplantation when a child’s overall health and quality of life have declined. At Cincinnati Children’s, our Intestinal Transplant team is closely partnered with the Cincinnati Center of Excellence in Intestinal Rehabilitation to provide comprehensive and innovative care for each child with intestinal failure. Urgent clinic visits and second opinion appointments with members from both teams are available for timely care of your child. Depending on your child’s current condition and the medical records available to us, their first appointment could involve an initial outpatient consultation or an inpatient admission for a full intestinal transplant evaluation.
Our Intestinal Transplant Program is also integrated with our Liver Transplant Center. These programs share team members, clinic space, inpatient care, and other resources. As these two organs are often transplanted together, this allows us to provide a collaborative and cohesive environment with the best care possible for patients receiving a combined liver and intestinal transplant, as well as those receiving an isolated intestinal transplant.
Making an Appointment at the Pediatric Intestinal Transplant Program
It is important to us that you get the necessary care for your child as easily as possible. You can contact us directly to schedule an appointment, or your primary care provider can place a referral to our center that will allow us to contact you directly once we receive it. If you have been told by another center that your child needs an intestinal or multi-organ (liver/intestine/pancreas) transplant, or if they your child has been declined for a transplant elsewhere, we can serve as a second opinion.
Before Your Appointment
Our care team will reach out to your child’s primary care provider and/or local subspecialist for details about your child’s medical history, past test results, and previous treatments.
To help you stay informed, you will also receive a phone call from a transplant financial coordinator at Cincinnati Children’s. This person will call you to discuss your insurance coverage and transplant-related benefits. They will also contact your insurance provider and then help you understand your insurance coverage for transplant-related services at Cincinnati Children’s. We will make sure you have all the information you need about the financial aspects of intestinal transplant.
On the Day of Your Visit to the Pediatric Intestinal Transplant Program
Intestinal failure and its associated complications are complex and require the expertise of many different doctors and specialists. We'll work to make your visit with us as easy and efficient as possible. Most importantly, we'll spend time talking with you and your child about any questions or concerns you may have. We'll also help you prepare for what may come next.
Before Your Appointment
Please arrive about 30 minutes before your child's appointment. It may take 15 minutes to park and walk to the Intestinal Transplant Clinic, located within the Liver Care Center (at the main hospital, Burnet Campus), and 15 minutes to check in at the registration desk on C2.
Please contact us if you are running late for your appointment.
At Your Transplant Evaluation Admission
There are many steps we must take before we’re able to put your child on the transplant waitlist for a new intestine. At Cincinnati Children’s, all intestinal transplant evaluations are done as an inpatient admission. During the hospital admission, all care will be coordinated for you through a series of appointments.
Your child’s transplant evaluation includes an in-depth exam. This includes blood work, imaging, and other tests to better understand your child’s current medical condition and their need for intestinal/liver transplantation. Your child’s evaluation will also include visits with all members of the multidisciplinary transplant team, including your primary intestinal/liver transplant medical doctor, anesthesiologist, transplant surgeon, transplant nurse coordinator, social worker, dietitian, psychologist, pharmacist, transplant financial coordinator and infectious disease physician.
During this visit, our intestinal transplant team shares our approach to pre- and post-transplant care. We outline the whole spectrum of intestinal transplantation, including your child’s illness, the transplant operation, the risks and benefits of transplant, and requirements for follow-up care.
After Your Transplant Evaluation Visit
After your transplant evaluation, the liver/intestinal transplant medical doctors and transplant surgery physicians will review all test results, imaging, blood work and other details of your child’s medical condition to determine if transplant is the best option for your child. Your transplant nurse coordinator will be in frequent contact with you during this time to keep you updated on the process and the status of your child’s approval for transplant.
If your child is approved for intestinal transplantation, they will be placed on the national transplant waiting list.
People with the most urgent need for a new organ(s) are placed higher on the list. While on the transplant waitlist, our team will closely monitor your child’s condition. If your child’s condition worsens, our team will ensure that their score on the waitlist is changed to reflect the medical urgency of their condition. Our social workers and psychologists will connect you with support groups and other resources to help you and your child during this time.
Our team will contact you when an intestinal graft becomes available. If your child is not already admitted to the hospital to await transplant, you will need to get to the hospital quickly to prepare your child for surgery. Depending on the distance from your home to Cincinnati Children’s, our team will help to arrange an urgent medical flight transfer for the time of the organ offer.
