When Your Child Has Surgery

About Retinopathy of Prematurity

Retinopathy of prematurity (ROP) is a disease that occurs in premature babies. It causes abnormal blood vessels to grow in the retina, the layer of nerve tissue in the eye that enables us to see. This growth can cause the retina to detach from the back of the eye, leading to blindness.

Some cases of ROP are mild and correct themselves, but others require surgery to prevent vision loss or blindness. Surgery involves using a laser or other means to stop the growth of the abnormal blood vessels, making sure they don’t pull on the retina.

Because there are varying degrees of ROP, the surgical approach used can differ for each case. The more you know about retinopathy of prematurity and your baby’s surgery, the easier the experience is likely to be for you.

Causes of ROP

Retinopathy of prematurity causes blood vessels to grow abnormally and randomly in the eye. These abnormal vessels tend to leak or bleed, which leads to scarring of the retina. When the scars shrink, they pull on the retina, causing it to detach from the back of the eye.

Since the retina is a vital part of vision, its detachment will cause blindness.

Blood vessels grow from the center of a developing baby’s retina 16 weeks into the mother’s pregnancy, and then branch outward and reach the edges of the retina 8 months into the pregnancy. In babies born prematurely, normal retinal vessel growth may be disrupted and abnormal vessels can develop, which can cause leaking and bleeding in the eye.

ROP can stop or reverse itself at any point, so it often resolves as the baby grows. Sometimes, though, the disease may progress to cause scarring, which pulls the retina away from the rest of the eye.

ROP has no signs or symptoms. The only way to detect it is through an eye examination by an ophthalmologist.

Treatment

ROP surgery is used to stop the growth of abnormal blood vessels by focusing treatment on the peripheral retina (the sides of the retina) to preserve the central retina (the most important part of the retina). ROP surgery involves scarring areas on the peripheral retina to stop the abnormal growth and eliminate pulling on the retina.

Since surgery focuses treatment on the peripheral retina, these areas will be scarred and some amount of peripheral vision may be lost. However, by preserving the central retina, the eye will still be able to perform vital functions like seeing straight ahead, distinguishing colors, reading, etc.

The most frequently used methods of ROP surgery are:

• laser surgery, the most common type of ROP surgery, in which small laser beams are used to scar the peripheral retina (also called laser therapy or photocoagulation). This procedure lasts about 30-45 minutes for each eye.
• cryotherapy, where freezing temperatures are used to scar the peripheral retina to stop abnormal blood vessel growth. For many years, cryotherapy (also called cryosurgery) was the accepted method of ROP surgery, but it has been all but replaced by laser therapy.

For more-advanced cases of ROP where retinal detachment has occurred, these methods are used:

• scleral buckling, which involves placing a flexible band, usually made of silicone, around the circumference of the eye. The band is placed around the sclera, or the white of the eye, causing it to push in, or “buckle.” This, in turn, causes the torn retina to push closer to and remain against the outer wall of the eye. This surgery takes 1-2 hours.

• vitrectomy, a complex surgery that involves replacing the vitreous, or the clear gel in the center of the eye, with a saline (salt) solution. Removing the vitreous allows for the removal of scar tissue and eases tugging on the retina, which stops it from pulling away. Vitrectomy can take several hours.

Your baby’s ophthalmologist will determine and discuss with you which ROP surgery method is best.

The Surgery

Your baby’s pediatric ophthalmologist will describe the procedure and answer your questions. This is a good time to ask questions about anything that you don’t understand.

ROP surgery is usually performed with a patient under either general anesthesia (medication that induces a deep sleep-like state) or deep sedation (medication that makes the patient unaware of the procedure but not as deeply sedated as with general anesthesia).

Although there is no cutting or stitching involved in laser surgery or cryotherapy, all surgical procedures for retinopathy of prematurity require that the baby be given sedation and pain medication or general anesthesia.

Laser surgery and cryotherapy are usually done at the child’s bedside with sedation and pain medication. Because scleral buckle and vitrectomy surgeries require general anesthesia, they are done in an operating room. For all procedures, your baby’s breathing and heart rate will be closely watched during the surgery.

Your child will receive eye drops to dilate the pupil(s) before each procedure. During the surgery, a tool called an eyelid speculum will be gently inserted under the eyelids to keep them from closing.

The eye will be covered with a patch after scleral buckling and vitrectomy, but not after laser or cryotherapy. Whether a hospital stay is required will depend on the child’s medical condition and age at the time of surgery.

Caring for Your Child

If admission to the hospital isn’t necessary, you’ll be able to take your child home about an hour after the procedure. Follow-up care for ROP surgery includes giving your child eye drops (to prevent infection) for at least a week.

To make sure the eyes are healing properly and that ROP hasn’t returned, eye exams should be scheduled based on instructions from the ophthalmologist. This is usually every 1-2 weeks. For scleral buckling, the ophthalmologist must examine the buckle every 6 months to account for your child’s growing eye.

The goal of surgery for retinopathy of prematurity is to stop the progression of the disease and prevent blindness. Although ROP surgery has a good success rate, not all babies respond to treatment. Up to 25% of babies who have ROP surgery might still lose some or all vision.

Keep in mind that for all types of ROP surgery, a degree of your child’s peripheral (side) vision will be lost. And even if the ROP has stopped progressing, vision still can be affected.

Since some vision loss and complications can occur, any child who has had ROP surgery should have regular, yearly eye exams well into adulthood.

If your child is having surgery or a procedure, it can help to understand how the various types of anesthesia make the experience more comfortable.

Anesthesia is broken down into three main categories: general, regional, and local, all of which affect the nervous system in some way and can be administered using various methods and different medications.

Think of the brain as a central computer that controls all the body’s functions and the nervous system as a network that relays messages back and forth from the brain to different parts of the body. It does this via the spinal cord, which runs from the brain down through the backbone and contains threadlike nerves that branch out to every organ and body part.

Here’s a look at what each kind of anesthesia does.

General Anesthesia

The goal is to make and keep a person completely unconscious (or “asleep”) during the operation, with no awareness or memory of the surgery. General anesthesia can be given through an IV (which requires a needle stick into a vein, usually in the arm) or by inhaling gases or vapors delivered by a mask or breathing tube.

If your child is having general anesthesia, the anesthesiologist will be there before, during, and after the operation to monitor the anesthetic medications and ensure your child is constantly receiving the right dose.

With general anesthesia, the anesthesiologist uses a combination of various medications to:

• relieve anxiety
• keep your child asleep
• minimize pain during surgery and relieve pain afterward (using drugs called analgesics)
• relax the muscles, which helps to keep your child still
• block out the memory of the surgery

After surgery, the anesthesiologist reverses the anesthesia process to help your child “wake up.” It usually takes about 45 minutes to an hour for kids to recover from general anesthesia. This recovery period is monitored by specially trained nurses in the post-anesthesia care unit (PACU) or recovery room. During recovery, your child is still under the care of the anesthesiologist.

Regional Anesthesia

An anesthetic drug is injected near a cluster of nerves, numbing a larger area of the body (such as below the waist).

Most children who receive regional anesthesia are deeply sedated or asleep for the procedure. Rarely, older kids or those who might be at risk by being asleep may be awake or lightly sedated for this type of anesthesia.

In kids, regional and general anesthesia are often combined, except in very special circumstances. Regional anesthesia is generally used to make someone more comfortable during and after the surgical procedure.

If regional anesthesia is appropriate for your child, you’ll discuss this with the anesthesiologist. The time required to recover from the numbing effect will vary depending on the type of regional anesthetic used.

Local Anesthesia

An anesthetic drug (which can be given as a shot, spray, or ointment) numbs only a small, specific area of the body (for example, a foot, hand, or patch of skin). With local anesthesia, a person is awake or sedated, depending on what’s best for the patient.

Local anesthesia is often used for minor outpatient procedures (when patients come in for surgery and can go home that same day). If your child is having an outpatient surgery or procedure in a clinic or doctor’s office (such as the dentist or dermatologist), this is probably the type of anesthetic that will be used.

The medicine can numb the area during the procedure and for a short time afterward, helping to control discomfort after surgery. The numbing medicine may wear off in about 2-4 hours.

Will My Child Get a Needle?

Often, anesthesiologists may give children a sedative to help them feel sleepy or relaxed before a procedure or surgery. Then, kids who are getting general anesthesia may be given medication through a special breathing mask first and then be given an IV after they’re asleep. Why? Because many kids are afraid of needles and may have a hard time staying still and calm. By using a breathing mask, kids can just breathe themselves to sleep. This approach helps ease some anxiety about needles and the overall procedure or surgery.

What Type of Anesthesia Will My Child Get?

The type and amount of anesthesia given will be specifically tailored to your child’s needs and will depend on various factors, including:

• the type of surgery
• the location of the surgery
• how long the surgery may take
• your child’s current and previous medical condition
• any allergies your child may have
• previous reactions to anesthesia (in your child or family members)
• medications your child is taking
• your child’s age, height, and weight

In some cases, you may be able to request which type of anesthesia your child gets. The anesthesiologist can discuss the options available, but, ultimately, will make the decision based on your child’s individual needs and best interests.

My daughter needs to undergo a surgical procedure, and the doctor has recommended “minimally invasive” surgery. What type of surgery is this? Will it be as safe — and effective — as standard surgery?
– Julianne

Minimally invasive surgery is becoming more and more common in hospitals. These procedures are performed through tiny incisions instead of one large opening. Because the incisions are small, patients tend to have quicker recovery times and less discomfort than with conventional surgery — all with the same benefits.

During a minimally invasive procedure, surgeons make several small incisions in the skin — just a few millimeters, in some cases. A long, thin tube with a miniature camera attached at the end (called an endoscope) is passed through one of the incisions. Images from the endoscope are projected onto monitors in the operating room so surgeons can get a clear (and magnified) view of the surgical area. Special instruments are passed through the other openings. These instruments allow the surgeon to perform the surgery by exploring, removing, or repairing whatever’s wrong inside the body.

In some cases, a patient might be scheduled for a minimally invasive procedure, but after getting a view inside the body the surgeon might have to “convert” the procedure to an open (conventional) surgery. This may be because the problem or the anatomy is different from what the surgeon expected.

Minimally invasive surgery can take longer than conventional surgery, but the pros usually outweigh the cons. Because the incisions are small, the child usually feels less pain, has less scarring, and may recover more quickly than with conventional surgery.

Not all procedures can (or should) be done through minimally invasive methods, however. Your doctor will tell you what type of procedure is best for your child. Be sure to ask about the possible risks associated with any procedure, as well as the potential benefits.

I’ve heard the term “elective surgery,” but I’m not sure what it means. Is it just a procedure that you choose to get, like a nose job?
– Heather

The name “elective” might imply that this type of surgery is optional, but that’s not always the case. An elective procedure is simply one that is planned in advance, rather than one that’s done in an emergency situation.

A wide range of surgical procedures can be considered elective. Cosmetic surgeries fall into this category, but so can things like ear tubes, tonsillectomies, and scoliosis surgery. Although these procedures may be done “electively,” they can be significant and potentially life-changing operations.

Another category is an urgent procedure. This is something that usually must be done that day (for example, an appendectomy).

Some surgeries (such as when someone is bleeding a lot internally) are considered emergency procedures. These must be done right away.

If your child is scheduled for elective surgery, you should receive instructions from your doctor about how to prepare and what to expect. You might consider asking questions such as:

• Are there certain foods or activities my child should avoid before the operation? How many hours before the operation should my child stop eating?
• Does my child need to take any special medicines before the operation, and should he or she continue taking regular medicines up until the day of surgery?
• Are there any other medicines or vitamins he or she should not take before the surgery?
• What kind of anesthesia will my child get?
• Will my child need to be on a breathing machine during or after the surgery?
• How will my child feel after the operation? Will pain medication be needed?
• How long does it take for most people to recover from this operation? Will my child need any rehabilitation?
• How soon should we follow up with you after the operation?

It’s important to remember that your insurance provider may have specific requirements about elective surgeries. It might only reimburse procedures done by “in-network” providers or may require you to get a second opinion. You’ll want to find out whether or not your insurance will cover the entire cost of the operation, the hospitalization, the prescriptions, and any other associated fees.

It’s a good idea to call your insurance provider to check up on these things when you’re in the early stages of planning elective surgery.

My son is having surgery in a few weeks. The nurses have given us pamphlets and educational materials to learn more about it, in preparation for something called “informed consent.” What does this mean?
– Ned

Informed consent is a legal term. It means that you are fully aware of the facts of a certain situation (in this case, a surgical procedure) before agreeing to it.

In order to get your informed consent, the doctor will discuss certain things with you, such as:

• your child’s diagnosis
• details about the procedure or treatment, and why it is being recommended
• the risks and benefits involved
• any possible alternative treatments
• the risks and benefits of any alternatives
• the risks and benefits of NOT undergoing the treatment or procedure

During the discussion, you will have a chance to ask questions. Asking questions is your right and responsibility — remember, there’s no such thing as a silly question. You’ll be asked to sign a written consent form before the surgery is performed. If you can’t be there to sign the form, you’ll be contacted by phone to give your consent.

In rare emergencies, a parent may not be available to give consent for a treatment or procedure for a young child — for example, in the case of an unconscious patient who comes into the emergency room. In these cases, doctors will operate using the principle of “presumed”or “implied”consent, using their professional judgment to do what is best for the child.

If your child needs a heart transplant, you’re probably feeling lots of emotions all at once — including anger, sadness, worry, and frustration. These feelings can become overwhelming, especially when your child is waiting for a new heart.

Fortunately, many kids who undergo heart transplants go on to live normal, healthy lives once they recover from surgery. In the long term, they need to take medicines to help prevent complications and have regular checkups to check heart function.

During this difficult time, the best way to care for your child (and yourself) is to stay informed and communicate openly with your child’s doctor. When appropriate, talk with your child to make sure that he or she understands what is going on and is prepared for the challenges ahead.

About Heart Transplants

A heart transplant is a surgery in which doctors remove a person’s sick heart and replace it with a healthy donor heart.

Transplants in children are done when a child’s heart does not work properly and he or she won’t survive without a new one. Doctors sometimes refer to this condition as heart failure, or end-stage pediatric heart disease. They usually try to treat heart failure with medicine, surgery, or other procedures before recommending a heart transplant.

When Is a Heart Transplant Needed?

A child’s heart might not work right for many reasons. Sometimes, babies are born with heart defects (malformations) that cause their hearts to fail. These defects are the main cause of heart transplants in babies.

Certain forms of heart disease, such as cardiomyopathy, also can cause heart failure. Cardiomyopathy happens when the heart muscle does not function well. As a result, the heart cannot pump enough blood to the body. Cardiomyopathy is the main reason that children and teenagers need heart transplants.

Some other (less common) reasons that children might need heart transplants include myocarditis, an inflammation of the heart muscle, and abnormal heart rhythms, known as arrhythmias or dysrhythmias.

Getting a Healthy Heart

Transplanted hearts come from organ donors — adults and children who have agreed (or their guardians have agreed) to donate their organs in the event of an untimely death. They choose to donate the organs because they want to help someone else who is sick.

Preparing for Surgery

If your child needs a heart transplant, your doctor will refer you to a transplant center, where you’ll meet the members of the transplant team. The team members, who work together to make sure that a child has a successful transplant, probably will include surgeons, cardiologists (heart doctors), a transplant coordinator, nurses, nutritionists, psychologists, social workers, and other health care professionals.

The transplant team will evaluate your child to determine whether a transplant will be beneficial and whether your child is a good candidate for a transplant. The evaluation will include a medical history, a physical examination, and some tests, such as blood tests to determine blood type.

The team probably will perform several other diagnostic tests, which may include:

• an echocardiogram, a test in which sound waves are used to produce an image of the heart
• an electrocardiogram (also known as an ECG or EKG), a test that records the electrical activity of the heart and can help find arrhythmias and heart muscle damage
• cardiac catheterization, a procedure in which a thin, plastic tube called a catheter is inserted into a blood vessel and then threaded through to the heart in order to get an inside glimpse at the heart and its chambers

If the doctors want to examine the heart more closely, they will do a biopsy, removing a tiny piece of tissue from the heart to examine under a microscope.

The heart transplant evaluation lets the team learn as much about your child as possible. But it’s also a time for you and your child to learn about what will happen before, during, and after the transplant. The transplant team is there to provide information and support, so be sure to ask them questions if you don’t understand something.

Organ Waiting Lists

If the transplant team decides that a heart transplant is the right treatment, your child will be placed on an organ waiting list. This list has the names of all of the people who are waiting for hearts or other organs. As of April 2015, more than 4,000 Americans were on the waiting list for a heart transplant, including over 300 children and teens.

A group called the United Network for Organ Sharing (UNOS) oversees this list and is in charge of fairly determining who receives the donated organs. Organs are assigned based on how sick a person is and how quickly he or she needs a new organ.

Organs assignments also are based on which person on the waiting list is the best match for the organ donated. That means that the organ is the right size for the person’s body and the donor has the same blood type as the recipient.

Your child might have to wait to find a heart that is a good match. Unfortunately, no one knows how long that wait will be. It could be just a few days or it could be years.

Waiting can be difficult, so consider seeking support from parents whose children have undergone or are awaiting transplants. Many communities have support groups or you can ask your doctor or the hospital social worker for recommendations, or search online.

Getting the Call

When a suitable heart becomes available, your family will be notified by phone or pager and you will need to go to the hospital for the surgery right away. Because this could happen at any time, you should always be prepared.

When you get to the hospital, the transplant team will prepare your child for surgery. They may run a few tests to ensure that the new heart is a good match. Once the team decides that everything is OK, your child will be moved to an operating room.

In the operating room, your child will be given anesthesia to sleep through the surgery and won’t feel anything. The surgeons will make an incision in the chest and remove the sick heart. They will connect the new heart by sewing its blood vessels to the blood vessels in your child’s body. The new heart will then be placed in the chest. To allow the doctors to monitor heart function, the incision might not be sealed immediately.

Most heart transplant surgeries last between 4 and 6 hours. Someone on the transplant team will keep you informed about how the procedure is going while you wait.

Recovery

Right after the surgery, your child will be moved to the cardiac intensive care unit (CICU). You will be able to visit your child in the CICU for brief periods. Your child will receive sedation and medicine for pain, and will remain asleep on the ventilator with a breathing tube in place until the doctors determine that the new heart is working well. This may take a few days.

The length of time your child will spend in the CICU will depend on his or her condition. Generally, the stay is 7 to 10 days. When ready, your child will be transferred to the general cardiac ward. The transplant team will continue to care for and closely monitor your child.

Most children stay in the hospital at least 3 to 4 weeks after surgery. During this time, kids and their families learn how to care for the new hearts. Be sure you understand all of the doctors’ instructions because your child will need to follow them carefully.

When the transplant team agrees that your child is ready, he or she will be discharged from the hospital. In the weeks that follow, though, your child will return to the hospital many times so that the doctors can continue to make sure that everything is going well.

Possible Complications

One of the most common problems after transplant surgery is rejection. Rejection is the body’s normal reaction to something foreign. Usually, this reaction is beneficial. For example, it’s the way the body defends itself against harmful germs.

In the case of a heart transplant, rejection means that the body doesn’t recognize the new heart and doesn’t know that it is helpful. As a result, the immune system tries to attack it. Medicines (called immunosuppressants) help to control this reaction. In a sense, they trick the body into accepting the new organ.

Although the risk of rejection is greatest in the first few weeks after transplant surgery, the body never completely accepts the new heart and so anti-rejection medications must be taken for life. The transplant team will decide which medicines are best for your child and these must be taken exactly as instructed.

Anti-rejection medications can cause some unwanted side effects, such as fever, headache, nausea, tiredness, and irritability. Be sure to report these and any other reactions to your doctor. Unfortunately, these medicines also leave your child vulnerable to certain infections. This risk is greatest right after surgery, and other medicines will be given to help reduce the risk. When possible, your child should avoid people who are sick to lessen the chances of getting an infection.

Usually, the amount of immunosuppressants taken is gradually reduced as the body gets used to the new organ and the risk of rejection decreases. In rare cases, the body refuses to accept the new organ and another heart transplant is necessary.

Living Heart Healthy for Life

Many kids who have heart transplants live normal, healthy lives once they recover from surgery. Some feel better than they ever have before. Since no one can predict how long the new heart will keep functioning, your child will need to do everything possible to keep the heart healthy.

You can help by making sure that he or she takes all medicines as directed. Doing so can be difficult, especially at first and for younger kids. Also, watch your child for signs of infection and rejection, including fever, tiredness, difficulty breathing, vomiting, weight gain, and poor appetite. Immediately contact a doctor if these or any other problems happen. Also, encourage your child to get plenty of exercise and eat well.

In the long term, regular checkups are needed to watch for complications. At first, these checkups will happen often (perhaps weekly). Gradually, they’ll become less frequent and eventually might be needed only once or twice a year.

Being told that your child needs a liver transplant may leave you feeling scared, angry, or confused. You might not fully understand why your child needs a new organ or where the new organ will come from. Just thinking about the months ahead may fill you with dread and worry.

Fortunately, most liver transplants are successful. Many kids who undergo these procedures go on to live normal, healthy lives once they recover from surgery.

In the long term, kids will need to take medicines to help prevent complications and have regular checkups to monitor liver function.

Causes of Liver Failure

The liver — a soft, triangular-shaped organ — is the body’s largest solid organ. It lies next to the stomach on the right side of the abdomen. The liver has many jobs, like cleansing the blood of toxins, producing bile (which helps to break down food during digestion), and storing energy in the form of a sugar. When the liver stops working as it should, a child can get very sick, and even die.

The liver might fail to work properly for many reasons. Among children, the most common reason for liver failure is biliary atresia. This happens when the liver’s bile ducts (tubes that carry bile out of the liver) are missing or blocked. When bile can’t leave the liver, it causes liver damage, or cirrhosis. The causes of biliary atresia are unknown. Some children who have it are born with it; others develop it later.

Other reasons the liver might stop working include:

• alagille syndrome: an inherited (genetic) disease that causes liver abnormalities and other problems
• alpha-1-antitrypsin deficiency: this inherited disorder prevents the body from producing the protein alpha-1-antitrypsin, leading to lung and liver damage
• hemochromatosis: an inherited disease that causes the body to take in and store too much iron, which can damage many organs
• hepatitis: this liver inflammation can have a variety of causes
• Wilson disease: an inherited disorder that causes a build-up of copper in the body, which can damage many organs

Getting a Healthy Liver

Doctors only recommend a liver transplant after they have exhausted all other treatments for trying to save a child’s liver.

During transplant surgery, the sick liver is removed and replaced with a healthy liver (or just part of a liver) donated from another person. Most organ donors are adults and children who have agreed (or their guardians have agreed) to donate their organs in the event of an untimely death. They choose to donate the organs because they want to help someone else who is sick.

If a child doesn’t need a whole new liver, sometimes a portion of a liver can be donated from a living person, like a parent. This is called a “living-related donor transplant.” A person who donates part of his or her liver can have a normal-sized liver again within just a few weeks of donating the tissue because livers are organs that grow new cells on their own (called regeneration).

Likewise, a child who receives a portion of a new liver will regenerate enough liver tissue to have a normal-sized liver within a few weeks of transplantation.

Determining When Surgery Is Needed

If your doctor thinks your child might benefit from a liver transplant, you’ll be referred to a transplant center. There, a team of surgeons, liver specialists (hepatologists), a transplant coordinator, nurses, nutritionists, psychologists, and social workers will evaluate your child to determine whether he or she is a good candidate for the procedure.

The evaluation will include a medical history, a physical examination, and some tests, including blood tests and imaging tests (such as an abdominal ultrasound or CT scan). To check the liver more closely, the doctors also might perform a biopsy (in which a sample of the liver is removed to be examined under a microscope).

During the evaluation, the transplant team will try to find out as much information about your child as possible. This is also a time for you and your child to learn about transplant surgery. The transplant team is there to provide information and support. Be sure to ask them questions if you don’t understand something.

Waiting for an Organ

If the transplant team decides that a liver transplant is the right treatment, your child will be placed on an organ waiting list. This list has the names of all people who are waiting for organ transplants. About 15,000 Americans are on the waiting list for a liver transplant, including more than 500 children.

A group called the United Network for Organ Sharing (UNOS) oversees this list and is in charge of fairly determining who receives the donated organs. They do this based on a score that represents how sick someone is and how quickly the person needs a new liver. The score for children is known as the pediatric end-stage liver disease, or PELD, score.

Organs are also assigned based on which person on the waiting list is the best match for the organ donated. That means that the organ is the right size for the person’s body and the donor has the same blood type as the recipient.

Your child may have to wait to find a liver that is a good match. Unfortunately, no one knows how long that wait will be. It could be just a few days, or it could be years.

Waiting can be hard. It can help to find a support group of parents whose children have had transplants or are waiting for transplants. To find a group in your area, talk to your child’s doctor or the social worker at the hospital, or check online.

Getting the Call

When a liver becomes available that is a good match, your family will be notified by phone or pager and you will need to go to the hospital right away. Because this could happen at any time, you should always be prepared.

When you get to the hospital, the transplant team will prepare your child for surgery. They may do several tests to ensure that the liver is a good match. Once the team decides that everything is OK, your child will be moved to an operating room.

In the operating room, your child will be given anesthesia, so that he or she will sleep through the surgery and not feel anything. The doctors will make an incision in your child’s belly, through which they will remove the sick liver and put in the donated liver. Blood vessels and bile ducts from the new liver will be attached to the other organs. The incision will then be stitched closed.

Most liver transplant surgeries take between 6 and 10 hours. Someone on the transplant team will keep you informed about how the procedure is going while you wait.

Recovery

Right after the surgery, your child will be moved to a room in the pediatric intensive care unit (PICU). You should be able to be with your child at this time. Your child will be given pain medicine and might be resting when you arrive.

How long a child stays in the PICU depends on his or her condition. Generally, the stay is just a few days. When ready, your child will be transferred from the PICU to a special unit in the hospital for transplant patients. There, the transplant team will care for and closely monitor your child. Most kids don’t have any problems after the surgery, but bleeding, infection, and other problems can happen.

Most children stay in the hospital for a couple of weeks after surgery. During this time, they and their families learn how to care for the new liver. Be sure you understand all of the doctors’ instructions, because your child will need to follow them carefully.

When the transplant team agrees that your child is ready, he or she will be discharged from the hospital. In the weeks that follow, though, your child will return to the hospital many times so that the doctors can continue to make sure that everything is going well.

Possible Complications

One of the most common problems after transplant surgery is rejection. Rejection is the body’s normal reaction to a foreign substance. Usually, this reaction is beneficial. For example, it’s the way the body defends itself against harmful germs.

In the case of a liver transplant, the body doesn’t recognize the new liver and doesn’t know that the liver is helpful. As a result, the immune system tries to attack it. Medicines (called immunosuppressants) help to control this reaction. In a sense, they trick the body into accepting the new organ.

Although the risk of rejection is greatest in the first few weeks after transplant surgery, the body never completely accepts a new liver and so anti-rejection medications must be taken for life. The transplant team will decide which medicines are best for your child and these must be taken exactly as instructed.

Anti-rejection medications can cause some unwanted side effects, such as fever, headache, nausea, tiredness, and irritability. Be sure to report these and any other reactions to your doctor. Unfortunately, these medicines also leave kids vulnerable to certain infections. This risk is greatest right after surgery, and your child will be given other medications to help reduce this risk. When possible, your child should avoid people who are sick to reduce the risk of infection.

Usually, the amount of immunosuppressants a person takes is gradually reduced as the body gets used to the new organ and the risk of rejection decreases. Rarely, the body refuses to accept the new organ and another liver transplant is necessary.

Staying Healthy for Life

Almost all children who have liver transplants go on to live normal, healthy lives after they recover from the surgery. Regular checkups are needed to monitor for complications. At first, these checkups will happen often (perhaps weekly). Gradually, they’ll become less frequent and eventually might be needed only once or twice a year.

After transplant surgery, you can help your child by making sure that he or she takes all medications as directed. Also, encourage your child to get plenty of exercise and eat well. These healthy behaviors will help to ensure that the new liver stays healthy for life.

It can be stressful whenever kids are in the hospital — and even more so when they’re admitted to the pediatric intensive care unit (PICU). But a basic understanding of the people and equipment in the PICU can help you feel better prepared to help your child recover.

What’s the PICU?

The PICU is the section of the hospital that provides sick children with the highest level of medical care. It differs from other parts of the hospital, like the general medical floors, in that the PICU allows intensive nursing care and continuous monitoring of things like heart rate, breathing, and blood pressure.

The PICU also allows medical staff to provide therapies that might not be available in other parts of the hospital. Some of these more intensive therapies include ventilators (breathing machines) and certain medicines that can be given only under close medical supervision.

Who’s Sent to the PICU?

Any child who’s seriously ill and needs intensive care and whose medical needs can’t be met on the hospital’s main medical floors goes to the PICU.

Kids in the PICU might include those with severe breathing problems from asthma, serious infections, certain heart conditions, some complications of diabetes, or those involved in a serious automobile accident or near-drowning.

Some kids may have been stable enough to initially be cared for on the hospital’s medical-surgical floors, but may be transferred to the PICU if they become more acutely ill. Following major surgery, many children are cared for in the PICU for several days.

How long kids will be in the PICU depends on their condition — some might stay a single day; others might need to stay for weeks or even months. As always, ask the doctor or nurse caring for your child if you have questions.

Who Takes Care of Kids in the PICU?

The PICU has many highly skilled people who care for kids. But not knowing who everyone is and what they do can be confusing and a little overwhelming at first. Most people will introduce themselves and tell you how they’re involved in your child’s care, but if they don’t, feel free to ask. At all times, you should feel comfortable asking the doctors and nurses questions about your child and the care being given.

The nurses who work in the PICU are experienced in caring for the sickest children in the hospital. They’re the people most closely involved with the minute-to-minute care of the kids. The PICU also tends to have a higher nurse-to-patient ratio than other parts of the hospital (in other words, each nurse cares for fewer patients, which gives them more time with your child).

Numerous physicians may care for your child, but the attending physicians are in charge. Your child might be cared for by a pediatric intensivist, who is a doctor who did a 3-year residency in pediatrics after medical school, followed by 3 more years of subspecialty fellowship training in intensive care.

The PICU team may include residents (doctors who’ve completed medical school and are training to be pediatricians) and PICU fellows (pediatricians training to be attending intensivists).

Many other subspecialists, such as cardiologists (heart doctors) or neurosurgeons (brain surgeons), might be involved, depending on your child’s needs. Respiratory therapists are experienced with ventilators and other breathing equipment, and are often involved in the care of PICU patients with breathing problems. Also, physical therapists, occupational therapists, nutritionists, and pharmacists may play a role in your child’s care.

You also might meet social workers who help families cope with the emotional burdens of having a critically ill child. They can help to arrange temporary housing for families (through organizations like Ronald McDonald House), assist with insurance issues, or coordinate discharge planning when your child is ready to go home.

You may want to ask whether the hospital has child life specialists. Trained in fields like development, education, psychology, and counseling, they help kids understand and manage being in the hospital. For example, they’ll listen when a child needs to talk, calm fears about what’s happening, or provide distractions like books and games.

The medical team meets every day, usually in the morning, to discuss each patient’s case in detail; these discussions are known as rounds. You may see a group of doctors, nurses, and others walking from patient to patient, planning the medical care for each patient. During rounds, you may be asked to stay in your child’s room or instructed to not enter or exit the PICU. This is to protect the privacy of other patients.

Family-centered patient care might be practiced in the PICU. If this is the case, you’ll be asked to participate in your child’s daily rounds. If you’re not present for rounds or don’t want to participate, the attending physician will inform you of the daily goals for your child by phone or in person.

By understanding everyone’s role and how each contributes, you may find the group of people caring for your child less intimidating.

What Should Kids Expect While in the PICU?

Possibly the most alarming aspect of the PICU environment is the medical equipment that may be attached to your child. The machines have alarms and display panels, and the noise and lights can be overwhelming.

Your child’s stay in the PICU might include:

• IVs. Almost all kids in the PICU have an intravenous catheter (or IV) for fluids and medications — usually in the hands or arms, but sometimes in the feet, legs, or even scalp. An IV is a thin, flexible tube inserted into the vein with a small needle. Once in the vein, the needle is removed, leaving just the soft plastic tubing.

  Some situations require larger IVs that can be used to deliver greater volumes of fluids and medicines. These are known as central lines because they’re inserted into the larger, more central veins of the chest, neck, or groin, as opposed to the hands and feet. Arterial lines are very similar to IVs, but they’re placed in arteries, not veins, and generally are used to monitor blood pressure and oxygen levels in the blood, not to give medicine.

• Medications. Most medicines can be given anywhere in the hospital, but certain ones that can have dangerous side effects are only administered to children who are closely monitored in the PICU. Instead of being given every few hours, some are given continuously, several IV drops at a time, and are known as drips. Doctors may use these medicines — like epinephrine, dopamine, and morphine, for example — to help with heart function, blood pressure, or pain relief.
• Monitors. Kids in the PICU are attached to monitors. The monitors are secured to the body with chest leads, which are small painless stickers connected to wires. These leads can count a child’s heart rate and breathing rate. Many kids are also connected to a pulse oximetry (pulse-ox) machine to check blood oxygen levels. Also painless, this machine is attached to the fingers or toes like a small bandage and emits a soft red light. Unless blood pressure is being directly monitored through an arterial catheter, kids usually will also have a blood pressure cuff applied to their arm or leg.
• Tests. Doctors may order a variety of tests to get more information, such as blood tests and urine tests. Sometimes they’ll test cerebrospinal fluid (CSF), which surrounds the brain and spinal cord. Images or pictures of different parts of the body also might be taken through an X-ray, ultrasound, computed tomography (also called a CT or CAT scan), and magnetic resonance imaging (MRI).
• Ventilators. Kids in the PICU sometimes need extra help to breathe. This may mean getting some extra oxygen from a face mask or tubing in the nose. But sometimes, a child needs to be connected to the ventilator (or breathing machine). This is done with an endotracheal tube (a plastic tube placed into the windpipe through the mouth or nose) or a tracheostomy (a plastic tube inserted directly through the skin into the windpipe) connected to the ventilator on the other end. There are different kinds of ventilators — different situations call for different machines — but they all serve the same basic purpose: to help a child breathe. A child will receive sedative and pain relief medicines while the breathing tube is in the windpipe.

Taking Care of Yourself

In the PICU, all of your child’s physical needs will be met by the staff. You, as a parent, are there to provide emotional support, love, and a familiar voice or touch. However, you shouldn’t feel as if you have to stay at your child’s bedside every minute of the day. Getting away from the commotion of the PICU briefly or even leaving the hospital grounds can help you gather your thoughts.

Staying around the clock with a child who’s in the PICU for more than a few days can be both physically and emotionally draining. Although some hospitals let parents spend the night with their child, some do not. Often, hospital staff will encourage parents to go home, get a good night’s rest, and return to the PICU refreshed in the morning, which can help them be even more of a comfort to their child.

If the hospital allows parents to spend the night, the decision whether to stay in your child’s room is yours. Either way, the PICU staff will support you and reassure you that your child will be well cared for. Whatever you do, make sure you get enough rest to be able to support your child throughout the PICU stay.

When Kids Leave the PICU

While some patients are sent home directly from the PICU, many are transferred to a regular floor of the hospital for further, less-intense monitoring and follow-up care. Still, discharge from the PICU is a significant milestone on the road to recovery. It means that a child no longer needs such an intensive level of monitoring, therapy, and/or nursing care.

But leaving the PICU might also cause some anxiety. It’s not unusual for parents of kids who were in the PICU to think, “He was so sick and now he’s better. But shouldn’t he stay here until he’s completely back to normal?” But the doctors and nurses in the PICU won’t transfer kids before they think they’re ready and stable, and the team on the hospital’s regular floor will have the resources necessary to continue guiding your child’s recovery.

Caring for a critically ill child is always stressful and difficult. But understanding the people and things in the PICU can help ease your family’s stress — leaving you better able to support your child and plan for when the entire family is home together again.