Lung Transplantation in Children

What is a lung transplant?

A lung transplant is surgery to remove one or both diseased lungs and replace them with healthy ones from another person. In most cases, lungs that are transplanted come from people who have died and donated their organs. This is called a cadaveric transplant. Healthy, nonsmoking adults who make a good match may also be able to donate part of one of their lungs. This type of transplant is called a living transplant. People who donate part of a lung can live healthy lives with the remaining lung.

Types of lung transplant procedures include:

  • Single lung. One lung is transplanted.

  • Double lung. Both lungs are transplanted.

  • Bilateral sequential (also called bilateral single). Both lungs are transplanted, one at a time.

  • Heart-lung transplants. Both lungs and the heart are taken from a single donor.

The type of procedure done will depend on your child’s condition.

Why is a lung transplant recommended?

A lung transplant is an option for children and young adults with long-term (chronic) lung diseases, when other treatments no longer work. A lung transplant may be needed if your child has any of the following diseases:

  • Severe cystic fibrosis (CF). This is the most common underlying disease that may require a lung transplant among children, teens, and young adults.

  • Bronchopulmonary dysplasia or chronic lung disease. This is a general term for long-term respiratory problems in premature babies resulting from lung injury to babies who must use a mechanical ventilator and oxygen for breathing.

  • Pulmonary hypertension. This is increased pressure in the arteries of the lungs.

  • Heart disease. Heart disease or heart defects affecting the lungs may need a heart-lung transplant.

  • Pulmonary fibrosis. This is scarring of the lungs.

  • Other lung diseases. These include end-stage lung disease, other chronic lung diseases, or inherited disorders that may cause lung disease.

Lung transplants can now be done on people of all ages, from newborn to adult. Your child’s healthcare provider will discuss the lung transplant selection criteria with you.

Where do transplanted organs come from?

In most cases, lungs that are transplanted come from organ donors who have died. Organ donors are adults or children who have become critically ill and will not live as a result of their illness. If the donor is an adult, he or she may have agreed to be an organ donor before becoming ill. Parents or spouses can also agree to donate a relative’s organs. Donors can come from any part of the U.S.

How are transplanted organs allocated?

The Organ Procurement and Transplant Network (OPTN) is responsible for allocating transplant organs in the U.S. OPTN receives data from hospitals and medical centers all over the country about adults and children who need organ transplants. The healthcare team that currently follows your child is responsible for sending the data to OPTN and updating them as your child’s condition changes.

Criteria have been developed to ensure that all people on the waiting list are judged fairly in terms of the severity of their illness and the urgency of receiving a transplant. Once OPTN receives the data from local hospitals, people waiting for a lung transplant are placed on a waiting list. The people in most urgent need of a transplant are placed highest on the list. They are given first priority when a donor lung becomes available.

When a donor lung becomes available, a computer searches all the people on the waiting list for a lung. People who are not good matches for the available lung are set aside. A new list is made from the remaining people. The person at the top of this list is considered for the transplant. If he or she is not a good candidate, for whatever reason, the next person is considered, and so forth. In some cases people lower on the list may be considered before a person at the top. Reasons for this can include the size of the donor organ and how far away the donor is located from the recipient.

How is my child placed on the waiting list for a new lung?

An extensive evaluation must be completed before your child can be placed on the transplant list. Testing includes:

  • Blood tests

  • Diagnostic tests

  • Psychological and social evaluation of your child (if old enough) and your family

Tests are done to gather information to help ensure your child receives a donor organ that is a good match. These tests will analyze your child’s general health (including heart, lung, and kidney function), nutritional status, and the presence of infection. Blood tests will help improve the chances that the donor organ will not be rejected. These tests may include:

  • Your child’s blood type. Each person has a specific blood type. When receiving a transfusion, the blood received must be compatible with your child’s blood type. If it is not, your child’s body will make antibodies against the blood. The same type of reaction will occur if the blood contained within a donor organ enters your child’s body during a transplant. Reactions can be avoided by matching the blood types of your child and the donor.

  • Kidney, liver, and other vital organ function tests

  • Tissue typing

  • Viral studies. These tests determine if your child has antibodies to viruses that may increase the likelihood of rejecting the donor organ, such as cytomegalovirus (CMV).

The diagnostic tests that are performed are extensive. But they’re needed to understand your child’s full health status. Other tests that may be done include:

  • Blood tests

  • Urine tests

  • Echocardiogram. This test evaluates the structure and function of the heart. It uses sound waves recorded on an electronic sensor that produce a moving picture of the heart and heart valves.

  • Electrocardiogram (ECG or EKG). A test that records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias), and detects heart muscle damage.

  • Cardiac catheterization. A diagnostic procedure in which a tiny, hollow tube (catheter) is guided through a vein or artery into the heart in order to image the heart and blood vessels. A colorless, liquid dye is given through the catheter and moving X-ray pictures are made as the dye travels through the heart.

  • MRI. A diagnostic procedure that uses a combination of large magnets, radiofrequencies, and a computer to produce detailed images of organs and structures within the body.

  • Lung biopsy. A procedure in which tissue samples are removed (with a needle or during surgery) from a lung and checked under a microscope.

  • MUGA heart imaging. A nuclear scan to see how the heart walls move and how much blood is expelled with each heartbeat.

  • Sputum culture. A diagnostic test performed on the material that is coughed up from the lungs and into the mouth. A sputum culture is often done to determine if an infection is present.

  • Pulmonary function tests. These tests help to measure the lungs’ ability to move air into and out of the lungs effectively. The tests are usually done with special machines into which a child must breathe.

  • Tuberculosis (TB) test

  • CT scan.  A diagnostic imaging test that uses a combination of X-rays and computer technology to make horizontal, or axial, images (often called slices) of the body. A CT scan shows detailed images of any part of the body, including the bones, muscles, fat, and organs. CT scans are more detailed than general X-rays.

  • Bronchoscopy. This test uses a video scope to examine the lungs and to perform a biopsy and culture for possible infection.

The transplant team will consider all information from interviews, your child’s health history, physical exam, and diagnostic tests to determine if your child can be a candidate for a lung transplant. After your child has been accepted to have a lung transplant, your child will be placed on the OPTN organ transplant list. 

The lung transplant team

The group of specialists involved in the care of children who are undergoing a transplant procedure is often called the transplant team. The lung transplant team consists of:

  • Transplant surgeons (thoracic). Doctors who specialize in transplantation and who will be doing the surgery. The transplant surgeons coordinate all team members. They follow your child before the transplant and continue to follow your child after the transplant and after discharge from the hospital.

  • Pulmonologists. Doctors who specialize in lung function and disease. Pulmonologists will help manage your child before and after the surgery.

  • Transplant nurse coordinator. A nurse who organizes all aspects of care provided to your child before and after the transplant. The nurse coordinator will provide patient education and coordinate the diagnostic testing and follow-up care.

  • Social workers. Professionals who will provide support to your family and help your family deal with many issues that may arise including lodging and transportation, finances, and legal issues. They can also help coordinate alternative means for school, so that your child does not get behind.

  • Nutritionists and dietitians. Professionals who will help your child meet his or her nutritional needs before and after the transplant. They will work closely with you and your family.

  • Physical therapists. Professionals who will help your child become strong and independent with movement and endurance after the transplantation.

  • Pastoral care. Chaplains who provide spiritual care and support.

  • Other team members. Several other team members will evaluate your child before transplantation and provide follow-up care, as needed. These include, but are not limited to, the following:

    • Pharmacists

    • Anesthesiologists

    • Respiratory therapists

    • Cardiologists

    • Hematologists

    • Urologists

    • Nephrologists

    • Infectious disease specialists

    • Lab technicians

    • Psychologists

    • Child life specialists

How long will it take to get a new lung?

There is no definite answer to this question. It may take 1 to 2 years on the waiting list before a suitable donor lung is available. During this time, your child will have close follow-up with his or her healthcare providers and the transplant team. Many support groups are also available to help you during this waiting time.

How are we notified when a lung is available?

Each transplant team has its own guidelines about waiting on the transplant list and being told when a donor organ is available. In most cases, you will be notified by phone that a donor organ is available. You will be told to come to the hospital immediately so your child can be prepared for the transplant.

What is involved in lung transplant surgery?

Once an organ becomes available to your child, you and your child will be immediately called to the hospital. This call can occur at any time, so you should always be prepared to go to the hospital if needed. Once at the hospital, your child will have some more final blood work and tests to confirm the match of the organ.

The child will then go to the operating room. The transplant surgery may take from 6 to 12 hours. But this can vary greatly depending on the type of surgery and on each individual case. Single lung transplantation is done with the child under general anesthesia. It is not always necessary to have cardiopulmonary bypass (rerouting of the blood through a heart-lung bypass machine) with a single lung transplant.

However if 2 separate lungs are transplanted, cardiopulmonary bypass is often necessary. Heart-lung transplants always require the use of cardiopulmonary bypass.

During the surgery, a member of the transplant team will keep you informed on the progress of the transplant.

What happen after a lung transplant?

After the surgery, your child will go to an intensive care unit (ICU) to be watched closely. The length of time your child will spend in the ICU will vary based on your child’s unique condition. After your child is stable, he or she will be sent to the special unit in the hospital that cares for lung transplant patients. Your child will continue to be watched closely. You will be educated on all aspects of caring for your child during this time. This will include information about medicines, activity, follow-up, diet, and any other specific instructions from your transplant team.

What is rejection?

Rejection is the body’s normal reaction to a foreign object. When a new lung is placed in your child’s body, the body sees the transplanted organ as a threat and tries to attack it. The immune system makes antibodies to try to destroy the new organ, not realizing that the transplanted lung is beneficial.

What are the symptoms of rejection?

Each child may have different symptoms of rejection. Some common symptoms of rejection may include:

  • Fever

  • Chills

  • Flu-like aches

  • Decreased urine output or fewer wet diapers than usual

  • Shortness of breath

  • Pain over the transplanted lung

Your child’s transplant team will tell you who to call immediately if any of these symptoms occur.

What is done to prevent rejection?

Medicines must be given for the rest of your child’s life to fight rejection. Each child is unique, and each transplant team prefers different medicines.

Anti-rejection medicines affect the immune system. So children who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making your child very susceptible to infection. Your child will have blood tests at different times to measure the amount of medicine in his or her body. This ensures your child does not get too much or too little of the medicine. White blood cells are also an important indicator of how much medicine your child needs.

What about infection?

The risk of infection is especially great in the first few months. That’s because higher doses of anti-rejection medicines are given during this time. Your child will most likely need to take medicines to prevent other infections from occurring. Some of the infections your child will be more at risk for include oral yeast infection (thrush), herpes, and respiratory viruses.

Lung transplant follow-up

Your child will have very close follow-up with the transplant team after leaving the hospital. This will allow for close monitoring of your child and the function of the transplanted lung. Follow-up visits may include the following:

  • Complete physical exam

  • Chest X-ray

  • Blood work

  • Lung function tests

  • Bronchoscopy

  • Continued education for you and your child

  • Medicine changes

Children who have received a lung transplant will need lifelong follow-up with doctors who specialize in transplant medicine. It’s vital to keep appointments with your child’s transplant doctor. You must also keep in contact with the transplant team when signs and symptoms of rejection occur. You (and your child, when old enough) are the first line of defense. You must know and recognize the signs and symptoms of rejection and report them as soon as possible to the transplant team.

Long-term outlook for a child after a lung transplant

Living with a transplant is a lifelong process. Medicines must be given that trick the immune system so it will not attack the transplanted organ. Other medicines must be given to prevent side effects of the anti-rejection medicines, such as infection. Frequent visits to and contact with the transplant team are essential. Knowing the symptoms of organ rejection (and watching for them on a daily basis) is critical. When your child becomes old enough, he or she will need to learn about anti-rejection medicines (what they do and the signs of rejection). Your child must eventually be able to care for himself or herself independently.

Children who have had lung transplants should never smoke and should stay away from secondhand smoke.

Every child is unique and every transplant is different. Results continually improve as doctors and scientists learn more about how the body deals with transplanted organs and search for ways to improve transplantation.

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