Intestinal Transplant
Evaluation and the Waitlist

Section 1: Transplant Evaluation
Transplant Evaluation
The evaluation process includes a thorough assessment of your child with numerous tests and procedures that allows the transplant team to gain valuable information about the health status of your child. The results and information that is obtained from this evaluation helps the transplant team determine if a transplant is the best way to treat your child.
Possible Evaluation Appointments
Possible Evaluation Tests and Procedures
Selection Committee
Once your transplant evaluation is complete, your child's transplant coordinator will present their case in front of the Intestinal Selection Committee to determine the best possible recommendations for ongoing care and intestinal transplant surgery.
Recommendations for transplant are made by the committee after review and discussion of test results and consultations:
-
Intestine transplant may be recommended, and your child will be formally listed with UNOS. -
Transplant may be deferred and your child will not be listed because additional information or tests are needed, medical management strategies may be indicated, or current psychosocial concerns are significant and must be resolved before listing. -
In some cases, transplant may be denied due to medical issues that may affect survival or your child will benefit from medical or other surgical interventions rather than transplant.
-
Transplant surgeons -
Gastroenterologists -
Nutritionists -
Social workers -
Ethicists -
Psychiatrists -
Mid-level providers -
Advanced practice nurses -
General surgery -
Pharmacists -
Anesthesia
Ohio Solid Organ Transplant Consortium (OSOTC)
- If your child is accepted as a candidate for transplant at a transplant center in Ohio, your child’s information will be sent to the Ohio Solid Organ Transplant Consortium (OSOTC) for further review. This process requires the transplant physician to write a letter to OSOTC, which may take 2-4 weeks.
- The primary purpose of the Ohio Solid Organ Transplantation Consortium is to ensure equitable access to quality medical care for those most likely to benefit from transplantation, regardless of ability to pay.
- Once OSOTC has granted approval and your insurance company has approved your child, information is then submitted to United Network for Organ Sharing (UNOS) for listing on the national waiting list.
Intestinal and Multivisceral Transplant Team
The intestinal and multivisceral transplant team consists of many members to make sure your child receives the best care possible. The team may include a:
-
Transplant Surgeon -
Gastroenterologist -
Hepatologist (Liver Doctor) -
Registered Dietician -
Infectious Disease Specialist -
Cardiologist (Heart Doctor) -
Transplant Nurse Coordinator -
Mid-level Clinicians (Physician Assistant, Nurse Practitioner) -
Transplant Pharmacist -
Physical Therapist -
Occupational Therapist -
Speech-Language Pathologist -
Pathologist -
Psychologist or Psychiatrist -
Social Worker -
Financial Coordinator -
Child Life Specialist
Section 2: Informed Consent
Informed Consent
-
Information about how and where a procedure or treatment is done and how long it takes.
-
The benefits and possible risks or side effects of the treatment/procedure.
-
The benefits and possible risks of other treatment options or alternatives.
-
The benefits and possible risks of not having any treatment.
-
After the discussion, an informed consent document is signed stating these things have been reviewed.
Who makes decisions for children under the age of 18?
Children under the age of 18 are not permitted to give consent for medical procedures and treatments. Parents are typically the primary decision-makers for their children. Parents give permission for their child to undergo procedures and treatments. The parent giving consent must be deemed competent- in other words, be able to understand the information being presented.
What is assent?
- In pediatrics, children who are old enough to understand medical discussions are sometimes asked to give assent for care.
-
Assent means that the child is agreeing to the treatment or procedure. Children can also dissent, which means they do not agree to participate.
-
The age at which assent is requested varies by institution and can be as young as 7 years old.
-
Assent is not required by law, but many institutions require children who are developmentally and cognitively able, to participate in decision making.
-
You can ask for assistance in assessing your child’s ability to give assent from pediatric social workers, psychologists, and child life specialists.
What is the informed consent document?
What questions should I ask before signing consent for my child?
-
What are my child’s choices other than transplant?
-
What are the risks and benefits of transplant for my child?
-
What does the evaluation process include?
-
How long do most patients with my child’s blood and organ type wait at this hospital for this type of transplant?
-
How long has this hospital and these surgeons been doing this type of transplant?
-
How many of these types of transplants does this hospital or surgeons perform each year?
-
Is my child allowed to be listed at more than one transplant center (e.g. multi-listing)?
-
What are the organ and patient survival rates for my child’s type of transplant at this hospital and how does that compare with the survival rates of the rest of the country?
-
How does the medical team decide whether or not to accept an organ for my child?
-
How long will we have to stay in the hospital and the area after my child’s transplant?
-
What is the extent of appointments and tests that my child will have to endure after his or her transplant?
-
What are the costs should we expect associated with transplant and what financial assistance is offered?
Section 3: The Waitlist
Organ Matching
- The United Network for Organ Sharing (UNOS) is the organization that coordinates the nation’s organ transplant system. Under contract from the federal government, UNOS operates the Organ Procurement and Transplantation Network (OPTN), which serves to maximize the use of deceased organs and collect and analyze data pertaining to the patient waiting list, transplants, and organ matching.
- Previously, for liver and intestinal organ allocation, UNOS had divided the US into 11 geographic regions to help facilitate transplantation. Within each region there were organ procurement organizations (OPOs) that served to increase the number of registered donors and coordinate the donation process. There are a total of 58 OPOs in the US. Regions.
- In February, 2020, the organ allocation policies changed to distribute organs based on acuity circles. This bases off organ distrbution on nautical miles (NM) rather than geographical boundraies. You can read more about the implementation and policies here.
Basics of the Waiting List
- The waiting list is a computer database that contains medical information on every person who is waiting for every type of organ transplant in the US and Puerto Rico.
- Your child does not have a number ranking for transplant and does not move up and down on the list every time another child receives a transplant.
- Each organ has its own allocation criteria. For intestines priority is based on clinical or medical status and geography. There is no way of knowing how long your child may be on the waiting list.
- Once your child’s name is placed on the national waiting list, you may feel like your family has moved from one period of uncertainty to another.
- It may take months to years for your child to receive the transplant that he or she needs.
- The waiting period can be a very difficult time for your child and your entire family.
- It is important to try and live as normal of a life as possible during the waiting period, while still remaining prepared as the ‘call’ may come at any time.
Waiting Status
-
Liver function test abnormalities.
-
No vascular access through the subclavian jugular, or femoral veins for intravenous feeding.
-
Medical indications that warrant intestinal organ transplantation on an urgent basis.
-
Please note: Policy 7.2 waiting time as of July 1, 2020, inactive candidates will accrue waiting time while inactive for up to a maximum of 30 cumulative days.
Removal From Waiting List
In some cases, a patient that was once a transplant candidate is no longer a candidate for transplant. There are two main reasons why your child may be removed from the transplant list:
1. Your Child’s Health Improves: Your child’s health and function improves and no longer qualifies for transplant. In the event that your child’s health declines in the future, he or she may be re-listed for transplant.
2. Your Child’s Health Declines: Your child’s health and function declines to the point that it is no longer safe to perform the transplant surgery. If your child’s health improves in the future, he or she may be placed back on the list.
Getting the Call
When an organ becomes available and is suitable for your child, you will receive a phone call for your child. Timing is very important and your child’s coordinator will tell you when you need to be at the transplant center. After arriving to the hospital your child will be admitted.
The preoperative testing consists of a chest X-ray, EKG, and comprehensive lab work. When appropriate, your child will be transported to the operating room. You and your family will be directed by the support staff to a waiting area and periodic updates will be provided while you wait for your child’s surgery to be completed.
Dry Run
Sometimes the transplanted organ is unable to be used and you may be sent home. This is known as a dry run. This can be very disappointing, but you and your child should have an understanding before transplant that this is very common. The transplant surgeons are looking out for your child’s best interest and will only give your child the most suitable organs.
Section 4: Additional Resources
Helpful Downloads from Transplant Unwrapped
Sign-Up or Log-In to Access These Downloads:
Transplant Unwrapped Kid's Activity Book on Intestinal Transplant
Helpful Links
1. United Network for Organ Sharing (UNOS)
Transplant Unwrapped: Learn From Others