Pediatric Liver Transplantation Information for Healthcare Professionals

Chapter 10: Waiting

Once your child has been officially listed with UNOS as a candidate for a liver transplant, a waiting period follows until a suitable donor becomes available.  The waiting time varies for each child based on organ availability.  Unfortunately, no one can predict how long you will wait.  The average waiting time can vary 1 day to one year.  Waiting for an available organ can often be the most difficult and stressful time of the transplant process.  As a parent, you may feel a sense of helplessness and loss of control.  The pediatric transplant team will do whatever they can to decrease your anxiety and to allow you to continue your normal activities.

When an organ becomes available, the transplant coordinator will first call your home or any other number you have provided (i.e., your work number).  You should never leave the area with your child without first informing the transplant coordinators or the doctors.  Organs are very difficult to procure, and it would be a tragedy if a liver became available for your child and you could not be found.  Always keep the transplant coordinator informed of your whereabouts.

There are things you can do to prepare yourself and your family for transplant while you wait.  Medical technology has improved dramatically in the last couple of years.  A liver can be stored for up to 16 hours out of the body.  Therefore, you do not always have to leave at a moment’s notice.  However, it would be helpful if you do the following:

• Make a list of things you may want to bring with you: phone numbers of family and friends you may wish to contact, a book to read (surgery can take anywhere from 8 to 14 hours), and change for the vending machine and phone calls.  It may help to develop a telephone tree if you have a large family.
• Once you are “on the list,” keep your bags packed.  You will not have time to think about what you should take with you.
• Make suitable arrangements for other siblings or family members.  Inform your employer of your child’s situation.  Most employers will be understanding if you are up-front with them from the beginning.  You may be out for a week to a month, depending on how your child is doing.
• Bring a toy, special photograph, familiar video, music, or special blanket to put in your child’s room after the operation, anything that has meaning to your child.  Familiar objects can lower a child's anxiety after surgery.
• Waiting for a transplant can be a stressful time for parents, children and extended family.  There is a great deal of uncertainty that occurs, but the donor organ offers hope and a new beginning.  The child with liver disease requires many special therapies (medications and nutrition) during the waiting period, which may add a financial burden to the family.  Because everyone in the family is affected by the long wait, whenever possible, take time for other children in the family, your mate and yourself.  Although the transplant will change the course of your child’s liver disease, it is not a “cure”.  One family expressed it simply by saying that you need to respect the new organ and take care of it for the remainder of your child’s life.  This places a great deal of responsibility on the family to recognize when their child is ill, to obtain medical care for him and to make sure he continues to take the medications on a regular basis.

In order for liver transplantation to occur, it requires the death of one person for the preservation of another.  Guilty feelings regarding the death of the donor are naturally associated with transplantation.  Talk with members of the transplant team about how you are feeling, and remember, the organ donors are giving us one of the greatest gifts – the gift of life. 

Alternative living arrangements can be coordinated with the transplant social worker.  As long as the child is not in the PICU, a parent may sleep by his or her bedside.  Housing outside the hospital, such as a local Ronald McDonald House (410) 528-1010, or the Children’s House at Johns Hopkins (410) 614-2560, is often available and coordinated through the social worker.  Also hotels in the vicinity often offer a discounted rate.