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Information for FamiliesWhat is acute liver failure? Why is the liver important? Finding a cause: first step of treatment Information about the patient to share with the doctor Will the ALF patient recover? What to expect in the hospital The intensive care unit Considering transplantation Experimental therapies The Pediatric Acute Liver Failure Study Group What is acute liver failure?Acute liver failure occurs when many of the cells in the liver die or stop functioning in a short period of time, so that most of the liver's function is lost. Acute liver failure, sometimes called ALF, usually develops rapidly and demands immediate care.The ALF patient may initially have all the symptoms of hepatitis, including tiredness, nausea, vomiting or jaundice (yellow eyes and skin). At a certain point, most patients become confused or sleepy. They can also bleed from the gums or stomach or bruise easily due to poor blood clotting. Early on, ALF is difficult to diagnose because it resembles other illnesses and is quite rare. Since ALF progresses so quickly, time is of the essence. It is important that patients with ALF be seen at a center with experience in treating ALF and in liver transplantation. ALF should not be confused with other types of liver failure due to cirrhosis or chronic hepatitis, which normally take years to develop. The various causes of ALF include reactions to prescription drugs, acetaminophen (such as TylenolŪ), overdoses and viruses. Sometimes no cause can be found. Why is the liver important?The liver, located in the upper right corner of the abdomen, performs over 500 vital functions. For example, the liver:
Finding a cause: first step of treatmentUpon the patient's arrival at the hospital, the doctor will want to be sure that the illness is acute liver failure (ALF) and then determine its cause. There are a variety of categories of diseases that will be investigated. They include infection, medication or drug reaction, toxins, heart or blood vessel problems and genetic abnormalities. Unfortunately, a specific cause is not determined in almost 50 percent of patients despite many blood and urine tests. Certain diagnoses are more common depending upon the child's age. There are conditions, such as an overdose of acetaminophen (Tylenol, for example), which can respond to specific treatment. Other conditions, such as some viruses or genetic disorders, may not have a specific treatment even if the disease is identified. However, identification of the disease that is causing your child's illness will help your doctor determine the best treatment plan.Information about the patient to share with the doctor
Will the ALF patient recover?The liver has a remarkable ability to recover despite serious injury. Although ALF is very serious and sometimes ends in death over a matter of a few days, full recovery is possible. Except for those therapies that stop the effects of certain drugs, there are no sure treatments for acute liver failure. Patients get sick very quickly and can recover just as fast, but sometimes remain sick for days. Some do not recover and need a transplant. ALF is uncommon and many factors complicate the clinical picture. To date, we do not have an absolute way to predict whether the child will recover completely, require a liver transplant, or die. Decisions are made based on the clinical progress of the individual patient as well as the cause of ALF.What to expect in the hospitalALF patients may require the level of care provided in an intensive care unit, or ICU. Once the initial testing is done, patients are put to bed in a quiet setting with their head slightly elevated. Antidotes such as N-acetylcysteine (NAC) are given to patients who have suffered from an acetaminophen overdose. Most of the care is focused on supporting the functions that a healthy liver usually provides. It is hoped that this support will provide a "bridge" to the time the liver heals itself. Unfortunately, it is impossible to predict when or if the liver will recover.The intensive care unit Not all children with ALF require ICU care. When intensive care is required, ICUs have the best resources to manage and monitor all bodily functions and are the safest place.
In the past 30 years, improved intensive care has increased survival for patients with ALF. However, they sometimes appear like cold places to outsiders. There are often several tubes inserted in the patient, which help to keep track of the kidneys and heart. Sometimes a pressure monitor is inserted in the skull to keep track of the brain swelling. Swelling of the brain is one of the most frequent complications of ALF. Although monitoring the swelling is not a treatment in itself, it does allow the medical staff to make informed decisions about other therapies. The doctors and nursing staff in the ICU watch for changes and sometimes move in to prevent or treat serious complications, such as swelling of the brain, bleeding, infection and kidney failure. When patients have acute liver failure, pain is usually not a problem. They are often drowsy and may appear to be asleep. Remember, stay positive at your child's bedside! Considering transplantationIf the liver is so badly damaged that there is little or no chance of recovery, blood tests and monitors will suggest that improvement is not going to happen fast enough to save the patient from a fatal complication. If this occurs, the doctors may recommend that the patient receive a liver transplant. There are standard guidelines to determine whether a patient is sick enough or, in fact, too sick for the surgery. A number of factors are weighed in the decision to perform a transplant, including how bad the liver injury appears to be, the patient's age, previous health conditions, presence of complications such as infection and availability of a suitable organ.Transplantation cannot be taken lightly as it means the patient will have a life-long requirement to take potent drugs to keep the new liver functioning. Patients who receive transplants still require intensive care but, if the new liver works well, their recovery is quite rapid. Even without liver transplants, about 1/3 of ALF patients, where the cause is not determined, will recover on their own. Experimental therapiesThe outlook is often very poor for ALF patients, and transplantation may not always be suitable. However, experimental treatments are sometimes used. If experimental therapies are available and appropriate, the physicians will discuss these options with you. The Pediatric Acute Liver Failure Study GroupBecause ALF is such a rare disease, a group of university hospitals is collecting information and blood samples to improve understanding and discover better ways of caring for ALF patients. The Pediatric Acute Liver Failure Study Group consists of 19 pediatric centers, with headquarters at the University of Pittsburgh.Information from the patient's hospital record as well as blood and tissue samples, when available, are used to study this condition. All information obtained is held in strict confidence, and no participation in the study is possible without informed consent from the child's parents or legal guardian. No names are used at any time in this study, so the information is truly confidential. If information about your child's illness is sent to the group, doctors and scientists will have a more complete picture of the disease and its causes so that new treatments for this rare and very serious condition can be found. This program is funded by the National Institutes of Health in Bethesda, MD and the Food and Drug Administration in Rockville, MD. Back to top |
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