Pediatric Intestinal Transplant Evaluation

Why Does My Child Need an Intestine Transplant Evaluation?

An intestine transplant evaluation is an important step along the way to an intestinal transplant. An intestinal assessment will help determine if an intestinal transplant is the best way to treat your child. If transplantation is the best treatment, the evaluation also helps determine which type of transplant would be best for your child.

Three Types of Intestinal Transplant

• Isolated intestinal transplant. Your child would receive only an intestine.
• Combined liver and intestinal transplant. Your child would receive both an intestine and a liver.
• Multivisceral transplant. Your child would receive an intestine as well as a liver, stomach, pancreas, and/or kidney.

The goal of the intestine transplant team is to give you and your child every opportunity to succeed and thrive when you return home after transplant. This begins at evaluation. The evaluation will give the transplant team a great deal of information. 

Pediatric Intestinal Transplant Evaluation Goals

• To confirm the cause of your child's intestinal failure and to find out how much damage has been done to his or her intestines and other organs.
• To assess your child's overall health and the extent to which their disease has caused other problems.
• To decide if your child will need other medical treatment or surgery before or after receiving an intestinal transplant.
• To make sure that your child is strong enough to have a transplant and to take the immunosuppressant medications that follow. The life-long medications that your child will take following transplantation weaken the immune system. The immune system protects your child from getting sick. It helps fight off infections like colds and flu. Since the medicines weaken the immune system, it is important that your child is strong as possible before and after an intestinal transplant.
• To make sure there aren't any problems that make an intestinal transplant inappropriate for your child. The transplant team may not recommend a transplant for your child if it will not help your child's health or if the transplant could actually worsen it.

How Long Will the Intestine Transplant Evaluation Take?

Your child's intestine transplant evaluation will probably take five days. At UPMC Children’s Hospital of Pittsburgh, it is usually done Monday through Friday as an inpatient. If your child has been evaluated at another transplant center, the evaluation may take only three days. Occasionally, an evaluation is done as an outpatient.

What Happens at the Intestine Transplant Evaluation?

There is a lot to accomplish during the evaluation. Your child will have a variety of assessments, tests, and procedures. The results give the transplant team important information. It will help them to decide if an intestinal transplant is the best way to treat your child.

No two intestine transplant evaluations are alike. The assessments and tests your child will have depend on each child's individual needs. Some of the assessments and tests your child may have include:

• Routine assessment. A routine or basic assessment is done. This includes getting a complete history on your child and doing a physical examination.
• Gastrointestinal assessment. A gastrointestinal (GI) assessment is an important part of the evaluation process. The gastrointestinal tract includes the stomach and intestines. Your child may have a barium swallow and/or a barium enema to examine bowel (intestinal) length, intestinal defects, anatomy or structure and functioning of the intestines. A barium study is a special type of X-ray. Barium has the consistency of a chalky milkshake. It provides a clearer picture of the GI tract than a regular X-ray does. Your child will drink barium for the barium swallow test. Barium that must be swallowed is usually flavored with chocolate or strawberry to make it easier to drink.
• Nutritional assessment. Nutritional status is very important to assess during an intestinal transplant evaluation. Many children with intestinal problems who are candidates for transplantation often have problems with unusual eating habits or oral aversion. They may have a fear of putting things, like food and drink, into their mouths. It is important to address eating habits and oral aversion prior to transplant. This may include occupational and speech therapies to overcome any difficulties your child may have eating and drinking so that upon transplantation he or she will be ready, willing, and able to meet his or her caloric and nutritional requirements by mouth. A simple way to get a nutritional assessment is with blood tests. For example, blood tests can be used to measure the level of vitamins A, D, E, K, and B12 in your child's body. It can also be used to measure things like calcium, magnesium, cholesterol, and zinc.
• Hepatic (liver) function. Hepatic is another word for liver. Blood tests can also be used to measure how well your child's liver is working. Since intestinal disease can lead to liver problems, it is necessary to examine your child's liver closely. This can help determine if your child might need a combined liver and intestine transplant. The doctor will be able to tell if your child's liver is swollen or if he or she has fluid in the abdomen (ascites) during the physical exam. Ultrasound and CT scan may be used to study the inside of your child's body. Ultrasound and CT scan are easy and painless ways for the doctors to have a good look at your child's liver, intestines, blood vessels, chest and pelvis.
• Vascular patency. This means examining your child's blood vessels to make sure they are not obstructed or blocked. Your child's blood vessels can be evaluated with ultrasound and CT scan. An angiogram or arteriogram may also be used. Dye is injected into a blood vessel through a small tube called a catheter. X-rays are then taken to show how well the dye travels through the blood vessels. The tests will detect any blockages or problems. The doctors can use this information to plan for any blood vessel reconstruction that may be needed during the transplant operation.
• History of infection and immune system assessment. Since the immunosuppressant medicines transplant recipients take weaken the immune system, it is important to have a good idea of how your child's immune system has worked in the past. You will probably need to provide a history of your child's illnesses to the transplant team. You will be asked about your child's prior infections. Blood tests can also tell the doctors if your child has any infections currently and even if he or she may be more likely to get certain infections after their transplant.
• Cardiac (heart) assessment. Cardiac is another word referring to the heart. The transplant team wants to make sure your child's heart is strong enough to withstand surgery. He or she will probably have an electrocardiogram (ECG or EKG) and echocardiogram (ECHO). Both procedures are painless. An electrocardiogram measures the rate and regularity of heartbeats and if there is any heart damage. An echocardiogram is a type of ultrasound. It will give the doctor moving pictures of your child's heart. The doctor will even be able to see the heart beating.
• Respiratory assessment. This is an evaluation of your child's lungs and his or her breathing. Your child will probably have a chest X-ray. A chest X-ray provides a picture of your child's lungs.
• Blood and tissue type. Blood tests will be done to learn your child's blood type (A, B, O, or AB; positive or negative) and tissue type. Your child's blood and tissue types must be compatible with those of the donor. You may hear this referred to as matching and making sure a transplant is a "good match."
• Growth and development.The transplant team will evaluate your child's growth and development. This may mean meeting with individuals from the physical therapy, occupational therapy, speech therapy, child life and child development departments.
• Psychological and social evaluation. You and your child may meet with a psychologist or psychiatrist and social worker for a psychological and social evaluation. A transplant is a big operation and a lifelong commitment on the part of you and your child. Although an intestinal transplant may make your child feel better and help him or her live a more normal life, it will require some changes in the life of your family and your child. For example, a transplant requires your child to take medicine for the rest of his or her life and to take extra care against infections. That's why it's important to understand how your child copes with change and stress and how well he or she will be able to comply with a new medical routine. If there are issues with any of these things, they can be addressed before transplant. The goal is to make sure your child has the greatest chance of success with his or her transplant. The transplant team also wants to know how much family support the child will have after transplant. Just like it takes a team to get through the transplant process, it will take family teamwork after your child's transplant, especially for the first year.
• Other measures of your child's nutritional status are caloric intake (how many calories he or she takes in), height and weight, skin folds, and head size for infants.

Depending on your child's unique medical condition and status, your child may have more or less assessments, tests, and procedures.

Pediatric Transplant Team

You, your family, and child will meet many members of the transplant team during the evaluation. Some of the members of your child's transplant team will include:

• Transplant surgeons. These are the doctors who actually perform transplant surgery. They will take care of your child before, during, and after transplant.
• Transplant nurse coordinator. The transplant coordinator's job doesn't end with the evaluation. A transplant coordinator has many jobs. Not only will your child's coordinator communicate information between other transplant team members, your child's local doctor, and you, he or she will make all of your child's appointments before and after transplant. You will probably spend a lot of time with your child's coordinator. He or she will work with you closely helping and guiding you through the whole process. An important role of your child's transplant coordinator is that of teacher. Your child's transplant coordinator will educate your family about intestinal transplantation and what to expect each step of the way.
• Clinical nurse specialist. Your family will also work closely with a clinical nurse specialist who is dedicated to working with transplant patients. He or she will provide detailed information and will help you understand the transplant process. The clinical nurse specialist evaluates your child's compliance with the new medical routine and often provides emotional and social support to the family and child.
• Social worker. A social worker will help make the transplant process easier for your family by providing emotional and social support. If you live far from Pittsburgh, the social worker will help you arrange transportation and lodging. He or she can make referrals for financial assistance and other support programs as needed. A social worker may also be a part your child's psychological and social evaluation.
• Financial coordinator. You will be assigned a financial coordinator who can assist you with the financial part of your child's intestinal transplant. This may mean helping navigate your way through the insurance system. If you need to raise funds for your child's transplant, the financial coordinator can help guide you through the fundraising process.
• Gastroenterologist. A gastroenterologist is a doctor who specializes in the digestive system. You may already be familiar with gastroenterology because of your child's intestinal disease. A gastroenterologist will do the assessment of your child's gastrointestinal tract (digestive system).
• Anesthesiologist. Anesthesiologists play an important role in transplant surgery. They will make sure your child feels no pain during the operation. An anesthesiologist may examine your child during the evaluation.
• Cardiologist. A cardiologist is a doctor who studies and works with the heart. He or she will evaluate the health of your child's heart.
• Psychologist/psychiatrist. You and your child and maybe other members of the family will probably meet with a psychologist or psychiatrist for the psychological evaluation. They will also be available to talk with you or your child throughout the transplant process. Facing your child's intestinal transplant may not be easy. Your child's transplant experience can be happy and scary at the same time. It is normal to worry. It may be a difficult time for your family, especially if you are far from home. Whether it's your child's transplant coordinator, clinical nurse specialist, or a psychologist or psychiatrist, sometimes just talking to someone can ease some of the fear and anxiety you may feel.
• Dietitian. You and your child will probably meet a transplant dietitian several times before and after transplant. Transplant dietitians have education and experience managing nutrition in transplant patients. A dietitian will help with your child's nutritional assessment during the evaluation. After receiving an intestinal transplant, a dietitian will review and help maintain your child's nutrition through diet and diet supplements. Your child's dietitian will teach you about any special diet your child may need to follow so that you are comfortable with it when you return home. He or she may also educate you about safe food handling and cooking in order to help avoid exposing your child to food borne infections.
• Pharmacists. Because of the immunosuppressant medications your child will take, you will become familiar with the pharmacists. They are a vital part of the transplant team. They will work closely with the transplant surgeons to make sure your child is getting the right type and amount of medicine to keep your child healthy and his or her transplant strong. It is a balancing act that requires a lot of attention, especially in the first year after transplant.
• Occupational/speech therapists. If your child has an oral aversion, occupational and speech therapists may work with your child to overcome it. Therapy is usually started before transplant so that once your child has a new intestine, he or she will be more likely to meet nutritional requirements eating and drinking by mouth rather than intravenously.
• Physical therapists. A physical therapist may evaluate your child prior to transplant and recommend an exercise and physical activity plan to help prepare for the surgery. After transplant, physical therapists will develop an exercise program for your child. Physical activity is encouraged. It will strengthen your child's body and may help the healing process both mentally and physically.

The intestine transplant evaluation process may seem overwhelming. Your child will have many tests and procedures. Your family will meet many members of the transplant team during the evaluation. They really are a team working together ready to help you at any time. Don't hesitate to ask any questions or to be involved in the process. The goal of the evaluation is to provide the transplant team with the information they need to determine the best course of treatment for your child. If the team decides an intestinal transplant is the best way to treat your child, then the information will also be used to make the transplant as successful as possible.

What Happens After the Transplant Evaluation?

After the intestine transplant evaluation is completed and you return home, the transplant team will meet and discuss the results of your child's evaluation. At the meeting, the team will decide if transplant is the best way to treat your child's intestinal disease. If the team decides an intestinal transplant is the best option, they will also determine which type of intestinal transplant is best for your child. A transplant surgeon and coordinator will talk to your family about their recommendation.

Children who are not recommended for intestinal transplantation are given an alternative treatment plan that can be followed with your child's local doctor. If an intestinal transplant is recommended, your child will be placed on the national transplant waiting list. The intestinal transplant waiting list is a list of all people -- children, teens, and adults -- waiting for an intestinal transplant. Your child's transplant coordinator will place him or her on the United Network of Organ Sharing (UNOS) national waiting list based on blood type, weight, and other UNOS criteria (www.UNOS.org). If your child also needs other organs, he or she will be placed on these waiting lists at the same time. You will receive a letter to confirm your child's placement on the waiting list.

Learn more about Intestinal Transplant Procedures for Children at UPMC Children’s Hospital.