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Children who have a diseased liver may consider transplantation as a treatment option. An evaluation is necessary to:
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- Determine the risks and benefits of transplantation to you/your child
- Identify potential problems
- Discuss the options of a living donor and deceased donor
- Identify the risks and benefits for potential donors
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Appointments can be made during our office hours: Monday through Friday, 8:30am-5:00pm. Call 617-35-LIVER (617-355-4837) or 888-CH-LIVER (888-245-4837).
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Your child will meet with a number of specialists that might include:
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- Transplant Surgeon: doctor who performs the actual transplantation procedure.
- Transplant Hepatologist: doctor who specializes in the diagnosis and treatment of diseases of the liver.
- Liver Transplant Coordinator/Nurse Practitioner: an advanced practice nurse with special training in diagnosing, treating and caring for liver 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 Doctor: doctor who makes recommendations for prevention and treatment of infectious diseases.
- Child Life Specialist: trained professional who uses play and other activities to help children adjust to and understand their hospital experience.
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The evaluation for a transplant usually takes place as an outpatient. During the evaluation, your child will undergo a number of tests. They may include:
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- Blood tests to determine blood type (a donor and recipient must have compatible blood), liver and kidney function tests and tests for viruses that your child may have been exposed to such as Hepatitis A, B and C, the AIDS virus, CMV, EBV and Herpes Simplex Virus
- An abdominal ultrasound which allows physicians to see the liver and flow of blood through arteries and veins
- A chest x-ray to see if your child's lungs are healthy
- Tuberculosis testing (PPD) if not completed by pediatrician
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Most of the initial tests can be completed in one day, but additional tests or consults may require a second visit.
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Please bring a copy of your child's immunization records and social security number to the evaluation.
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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:
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- The evaluation has identified factors that make a liver transplant not possible.
- The evaluation has identified that there are other treatments or medications available that should be considered prior to liver transplant; therefore your child is deferred.
- The evaluation has identified that a liver transplant is a treatment option.
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In all of these situations, the liver 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 liver 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.
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Once you and your doctors decide that a liver 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 liver.
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The wait can be from days 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.
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Use your waiting time to prepare for your child's surgery. A donor liver can become available at any time of the day or night. It is very important to plan ahead for when this occurs.
Transportation arrangements should be planned so that you may reach the hospital in a timely fashion. You should also be aware of any medications your child should take before coming to the hospital.
The goal during listing and waiting is to preserve your child's current liver function and to ensure the best quality of life possible. Your child will have frequent visits to the hospital for periodic check-ups including physical examinations and blood work.
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Overall, children and adolescents have done well emotionally with this waiting period. There is no question that it is stressful to wait with uncertainty as to when the transplant may occur.
Parents have certainly voiced the same stress. The liver transplant team stands ready to support your child and yourself during this waiting period. Our social worker and child psychiatrist are also available and will check in with your family as needed.
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