What to Expect If Your Child Needs an Intestine Transplant
Before Intestine Transplant
For our team at Seattle Children’s to decide if an intestine transplant is right for your child, we must do a complete check-up, also called a pre-transplant evaluation.
After your child’s evaluation, the transplant team will decide if a transplant is the best option for your child.
If your family and the transplant team agree that an intestine transplant is the right decision, your child will be put on the waiting list for a small intestine (and other organs if needed). There are many things you must do while waiting for an intestine transplant for your child.
Intestine Pre-Transplant Evaluation
This evaluation checks if an intestine transplant is an option for your child. It is usually done on an outpatient basis.
It may take several days or weeks to complete the entire process, depending on the medical urgency of your child’s case. You might need to make several visits to the Intestine Clinic and other clinics during that time.
During your child’s evaluation, the team at Seattle Children’s will help you and your family learn more about transplant. You will learn about:
- Benefits and risks of transplant
- Medicines that are needed to suppress your child’s immune system
- Health insurance coverage
- Organ donation process
- What to expect while waiting for an organ
- What to expect during surgery
- What to expect after surgery
Your child’s evaluation will include:
- A review of your child’s medical records and history
- Clinic visits with the transplant team
- A physical exam
- Blood work and diagnostic tests
The evaluation begins with a review of your child’s medical and surgical history. You will then have an office visit with a doctor who specializes in conditions of the stomach and intestines (a gastroenterologist).
You will meet with a transplant surgeon, who will explain the surgery and discuss any aspects of your child’s transplant evaluation that may affect the surgery or that may be concerning to the team.
You will also meet other members of the transplant team, such as these people:
- Transplant nurse coordinator
- Nurse practitioner
- Social worker
- Transplant specialist
The team will explain the surgery, donor options and the type of care your child will need after the transplant.
Your child’s transplant nurse coordinator will organize your child’s pre-transplant evaluation. This includes coordinating the tests and consultations needed for a complete evaluation.
Your child’s social worker will help your family and child understand the emotional and practical aspects of transplant. They will help you address your child’s social and emotional needs.
Your transplant specialist will schedule your child’s clinic appointments and help you understand the details of your insurance coverage that relate to transplant. If needed, the transplant specialist and social worker will work together with you to identify additional sources of funding.
The pharmacist will help explain the medicines your child will need after transplantation.
The dietitian will tell you how food and good nutrition can help your child before a transplant. They will explain how your child’s nutritional needs will change after transplant.
Many tests are needed for the pre-transplant evaluation. These tests help us to:
- Decide how urgently your child needs a transplant
- Ensure that your child receives a donor organ that is a good match
Types of testing and interviews include:
- Blood and lab tests
- Diagnostic tests
- Social work evaluation
- Nutritional assessment
- Financial assessment
The transplant team will determine whether your child needs any additional tests.
We consider each child on an individual basis. We may request other consultations so we can understand your child as completely as possible.
Intestine Transplant Decision
To decide if an intestine transplant is the right treatment for your child, the transplant team at Seattle Children’s will carefully look at your child’s:
- Medical need for transplant (urgency)
- Blood and diagnostic tests
- Medical history, including previous surgery
- Physical exam
We also consider what we learn in our meetings with your family.
You can expect a decision within 2 weeks of completing your pre-transplant evaluation.
When all of your child’s information and test results are ready for review, the entire transplant team will meet to make a recommendation about transplant surgery for your child. A member of the team will communicate the recommendation to you by phone or at your child’s next scheduled clinic visit. You will also receive a summary of our decision in writing.
The decision could include any of the following:
- Your child is ready to be listed for transplant now.
- Transplant is not the best option for your child.
- Your child might be a candidate for transplant in the future, but we are not recommending a transplant at this time.
If your child’s evaluation indicates that there is a chance of restoring intestinal function through diet, medicine or nontransplant surgical therapies, we may recommend your child be seen at our Intestinal Rehabilitation Program.
If the team decides that your child is an immediate candidate for transplant and you as a family agree, we will add your child to the United Network for Organs Sharing (UNOS) transplant waiting list.
Preparing and Waiting for an Intestine Transplant
Waiting for a donor organ can be a stressful time for your child and family. Here are some suggested ways to prepare and cope.
Make sure your child takes all medicines as prescribed. Tell your child’s transplant nurse coordinator if any other medicines have been prescribed or changed.
Also, tell the transplant nurse coordinator if your child is hospitalized for any reason or if your child develops any new medical problems or infections, even if they can be treated out of the hospital.
Your child’s dietitian and physical therapist will help you set up a plan to maintain your child’s strength during the waiting period.
Let your child’s team know of any change in insurance coverage.
Wait time can be a good time to get to know the transplant team and to become familiar with the care that your child will need after the transplant.
Some families find it helpful to meet other transplant patients and their families. If you would like to do this, ask your nurse coordinator.
Good company will take your mind off waiting and enhance your quality of life.
Depending on your insurance and your financial situation, this could be a good time to start fundraising. Even with insurance, there are many out-of-pocket costs associated with transplant such as some medicines, insurance co-pays and deductibles.
The transplant social worker can help you with ideas on how to start fundraising.
Take time to read with your child. Listen to music together. Watch funny movies. An older child can write in a journal, meditate or do light yoga. You can play games with a younger child. Focus on creating stress-free, enjoyable times with your family.
You will need a cell phone with voicemail. If you do not have a cell phone, ask your transplant nurse coordinator for a pager, which we can order for you. If you have a landline, you will need an answering machine.
While waiting for an intestine from a deceased donor, it is important that you do not travel far from your local area. Tell the transplant nurse coordinator about any changes to your address or phone number. Tell the transplant nurse coordinator if you plan to be away from the area and will not be able to get to the hospital within 6 hours. You may need to relocate to the Seattle area while waiting for an organ if you will not be able to get to the hospital within 6 hours either by plane or car.
You must be able to get to the hospital within 6 hours after you are told that an organ is available if you are waiting for a deceased-donor organ. Your transplant nurse coordinator and social worker can help you make travel plans ahead of time so everything is arranged when you get the call.
Most patient rooms have a pull-out couch for 1 parent or legal guardian to sleep overnight. When your child is in the Pediatric Intensive Care Unit (PICU) right after surgery, 1 parent may use a separate sleeping room if a room is available. Siblings may not spend the night in the hospital.
Learn more about our hospital services, as well as other services in the neighborhood.
You must be ready to leave as soon as the call comes if you are waiting for an organ from a deceased donor. Be sure to pack an extra 24-hour supply of your child’s medicines. Remember your cell phone and charger. Include clothes for you and your child and a few toys, books, videos, music and a favorite blanket – things that help pass time and soothe your child.