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Intestine and Multivisceral Transplant Program

 Intestine and Multivisceral Transplant Program
  Time of Transplant (Surgery)
  After Transplant
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 Pediatric Transplant Center
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Flower Before Transplant (Evaluation)
The evaluation for an intestine or multivisceral transplant is quite extensive. At first, we have you come in for an informational visit, that allows you to meet the transplant team members and discuss the option of a transplant. This is an opportunity for you to ask questions and share any concerns you may have about transplant.

If you and the transplant team agree that a transplant would be beneficial, then you will be scheduled for an evaluation.

How do I make an appointment for an evaluation?

Appointments can be made during our office hours: Monday through Friday: 9:00am-5:00pm. To schedule an appointment, call 617-35-LIVER (617-355-4837) or 888-CH-LIVER (888-245-4837).

Who will my child meet with during the transplant evaluation?

Your child will meet with a number of specialists during the evaluation process. This is to ensure that all of your medical needs are taken care of prior to transplant. Some of the specialists you will meet include:

  • Transplant Surgeon: doctor who performs the actual transplantation procedure.

  • Transplant Gastroenterologist: doctor who specializes in the diagnosis and treatment of transplanted intestinal diseases.

  • Intestine and Multivisceral Transplant Coordinator/Nurse Practitioner: an advanced practice nurse with special training in diagnosing, treating and caring for intestine and multivisceral transplant patients. She is the link between the medical/surgical care team and your child.

  • Social Worker: healthcare professional who will work closely with you to help you understand the impact of your child's condition on you and your family, help you understand insurance coverage and other financial issues, and help connect you with resources such as support groups and counseling.

  • Dietician: healthcare professional who monitors the caloric intake of your child and assists with optimizing your child's food/formula.

  • Infectious Disease Nurse Practitioner: healthcare professional who reviews your child's immunization schedule as well as environmental risks for infection.

  • Child Life Specialist: trained professional who uses play and other activities to help children adjust to and understand their hospital experience.
What happens during the transplant evaluation?

In general, the evaluation is conducted over the course of 3-5 days at Children's Hospital Boston. During the evaluation, you will undergo a number of tests and meet with several specialists.

Tests may include:

  • Blood tests to determine blood type (a donor and recipient must have compatible blood).

  • Blood tests to assess the function of the liver, lung and other vital organs.

  • Tests to determine if your child has antibodies to viruses that can become activated after transplant, such as cytomegalovirus (CMV).

  • An abdominal ultrasound which allows physicians to see the liver and flow of blood through arteries and veins.

  • Barium enema, an x-ray study in which a small tube filled with barium is inserted into your child's rectum and large intestine in order to evaluate his/her anatomy.

  • A chest x-ray to see if your child's lungs are healthy.

  • Electrocardiogram (EKG) to evaluate your child's heart.

  • Echocardiogram to assess the heart's structures and function.

  • D-Xylose absorption test to measure the intestines' ability to absorb nutrients.

  • Gastric emptying study to help detect gastroesophageal reflux. It also measures gastric emptying time.

  • Upper GI and small bowel follow through to check your child's intestinal length and rule out obstruction. The procedure is a type of x-ray in which your child drinks (or it can be administered via a G-tube) a substance called barium, which coats the intestine.
What should I bring to the appointment?

It is very important that we receive a copy of your child's medical records before the appointment date, including any studies (x-rays, ultrasounds, CT scans, blood work) done at another facility.

Also bring a copy of your child's current immunization schedule.

What happens after the evaluation?

When the evaluation is complete, the transplant team will inform you of the results. They will also communicate these findings to your primary care physician. Generally, there are three possible recommendations:

  • The evaluation has identified factors that make an intestine or multivisceral transplant not possible.
  • The evaluation has identified that there are other treatments or medications available that should be considered prior to transplant; therefore your child is deferred.
  • The evaluation has identified that a intestine or multivisceral transplant is a treatment option.
In all of these situations, the transplant team will work closely with you and your child's physicians to develop a coordinated care plan.

Once you and your doctors decide that a transplant is the most appropriate treatment option, your child will be "listed" on a national computer system, United Network of Organ Sharing (UNOS), as a potential transplant recipient.

How do we get on the waiting list for a new organs?

Once you and your doctors decide that a transplant is the most appropriate treatment option, your child will be "listed" on a national computer system, United Network of Organ Sharing (UNOS), as a potential transplant recipient. UNOS matches organ donors by weight and blood type with children waiting for a new organs.

How long is the wait?

The wait can be from weeks to months to years depending on the severity of illness, blood type and weight. You will be given a beeper for us to be able to reach you at all times.

What happens while we wait?

Use your waiting time to prepare for your child's surgery. A donor organ can become available at any time of the day or night. It is very important to plan ahead for when this occurs.

Planning how you will get to the hospital has to be well thought out in advance. Be sure to consider to the possibility of inclement weather, distance, and rush hour traffic.

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