Childhood Cancer

Childhood Cancer

Liver transplantation

A small number of children with liver tumors need a liver transplant. Before selecting a transplant center, research your options. Institutions may just be starting a transplant program, or they may have lots of experience. Some may be excellent for adults, but have limited pediatric experience. Some may use a team approach (including hepatologists, pediatric surgeons, pediatric social workers, nutritionists) and others may not. Additionally, your insurance plan may require that your child go to a specific transplant center.

Choosing a transplant center

To help you learn about the policies of different transplant centers, here are some questions you can ask:

•  How many pediatric transplants did your institution do last year?

•  How successful is your program? What are the 1-year, 2-year, and 5-year survival rates for children with the same type and severity of disease my child has? (Some institutions accept very high-risk patients, and these statistics would not compare to those of a place that only performs less risky transplants.)

•  What is the nurse-to-patient ratio? Do all the staff members have pediatric training and experience?

•  What support staff is available (educator, social worker, child life therapist, chaplain, etc.)?

•  Will my child be in a pediatric or combined adult–pediatric unit?

•  What are the institution’s rules about parents staying in the child’s hospital room?

•  What on-site or nearby housing is available for families of children undergoing transplantation? What are the costs for this housing?

•  Describe the transplant surgery in detail, including anticipated complications.

•  Explain the risks and benefits of this procedure.

•  What is the average length of time before a child leaves the hospital? For a child who has been discharged from the hospital but whose home is far away, how long before he can leave the area to go home?

•  What will my child’s life be like, assuming all goes perfectly? What will it be like if there are problems?

•  What are the long-term side effects of this type of transplant? What long-term follow-up is available?

•  How will we be notified when a donor liver is available?

•  How much will this procedure cost? How much will my insurance cover? (This is not applicable in Canada, where provincial health programs cover the cost of the procedure.)

Many transplant centers have videos and booklets for patients and their families that explain services and describe what to expect before, during, and after the transplant. You can call any transplant center that you are considering and ask staff to send you all available materials.

Paying for the transplant

We talked with several parents about the two transplant programs that are closest to our home. We visited both programs and picked the one a little farther away just because the services for the kids and the quality of life for the family sounds much better. If all goes well, we will be there less than 3 months. If problems develop, it could be much longer.

Liver transplants are expensive. Insurers might cover the cost of the procedure without question if the transplant is considered the standard of care. However, if your insurance company considers the type of transplant proposed for your child to be experimental, it might not be covered. Most insurance plans have a lifetime cap, and many only pay 80 percent of the costs of the transplant up to the cap. The Children’s Organ Transplant Association (http://cota.org/learn-more) can help with fundraising efforts.

Most transplant centers employ financial counselors who will work with your family to sort through insurance issues. In addition, most insurance companies will assign your child’s care to a transplant coordinator or case manager, who is responsible for making arrangements with the transplant center and handling financial issues. Getting to know your hospital financial counselor and your insurance coordinator and voicing your needs and concerns may help during this stressful time.

Finding a liver

Children who need a liver transplant may need an entire liver (from a deceased donor) or a portion of a liver from a living donor. If your child needs an entire liver, he or she will be put on a transplant list. Your family will be given a device to notify you the moment a liver is available. If only a portion of a liver is needed, it can come from a parent, family member, or family friend, as long as the donor meets age, size, blood type, and health requirements. If a relative donates part of a liver, it is called a “living-related donor transplant.” Within a few weeks, the donor’s liver will regrow to a normal size (called regeneration).

The transplant and beyond

We are doing two things. Wyatt is on transplant list for a whole liver, but two of my relatives have the right blood type to donate a portion of their livers. But, they need to lose weight to be in the right BMI [body mass index] to be a donor for the surgery. We are working with Angel Flight Northeast, and they sent me a list of pilots who would fly us to the hospital if a liver becomes available. So, I basically go to bed with anxiety and wake up with anxiety.

Before the surgery, you child will have many tests, including blood and urine tests, echocardiogram, electrocardiogram, and a chest x-ray (these procedures are described in Chapter 10, Coping with Procedures). During surgery, the surgeon will remove the diseased liver and will connect the new liver (whole or part) to your child’s hepatic artery, hepatic vein, portal vein, and bile duct. The surgery usually lasts 5 to 10 hours. Your child may spend 2 or 3 days in the intensive care unit and then a week or so in the hospital. After discharge, you’ll need to stay in the area so the transplant team can monitor your child’s health and manage the medications needed after the transplant.

One possible problem after a liver transplant is rejection of the organ by the body’s immune system. Medications (called immunosuppressants) are given to help minimize the risk of rejection. Although the risk of rejection is greatest in the first few weeks after the transplant, your child will have to take anti-rejection medications for the rest of his or her life. These medications also leave children vulnerable to certain infections, so care must be taken to avoid people who are sick.

In some rare cases, the body rejects the new organ and another liver transplant is necessary. However, most children do very well after this life-saving procedure.