Lung Transplant in Children
A lung transplant is a surgical procedure performed to remove one or both diseased lungs from a patient and replace them with a healthy one from another person. The majority of lungs that are transplanted come from deceased organ donors.
Healthy, non-smoking adults who make a good match may be able to donate a part (a lobe) of one of their lungs. This type of transplant is called a living-donor transplant. Individuals who donate a part of a lung can live healthy lives with the remaining lung tissue.
There are various types of lung transplant procedures, including
- Single lung
- Double lung
- Bilateral sequential or bilateral single (transplantation of two lungs)
- Heart-lung transplants (transplantation of both lungs and the heart taken from a single donor).
The type of procedure performed depends on the condition of the recipient
Preparing for surgery
Once an organ becomes available to your child, he 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.
At the Hospital, your child will be examined by the transplant team, the transplant surgeons and anesthesiologists. Other activities that will take place before surgery include:
- A chest x-ray and electrocardiogram (EKG)
- Blood samples from a vein in your child’s arm
- Placement of an IV catheter in your child’s arm or hand
- Vital signs (blood pressure, pulse, and temperature)
Before surgery, you will be asked to sign a consent form giving the surgeons and anesthesiologists permission to perform your child’s lung transplant. During most of the preparation period, you will be allowed to stay and visit with your child. When it is time to go to the operating room (OR), the anesthesiologist will take your child to the OR.
You may accompany your child on their way to the operating room, and once your child goes into the OR, you will be taken to a waiting room. The assigned cardiac intensive care nurse will stay in touch with you throughout the surgery to keep you informed about your child’s progress.
In the operating room
Once in the operating room, doctors and nurses will continue to support and prepare your child for the lung transplant surgery. Our Cardiothoracic Anesthesia team will give your child medicine to help her relax and sleep quickly, and will remain with your child until she returns to the Cardiac Intensive Care Unit (CICU) for recovery post transplantation, where she will receive round-the-clock attention from a team of dedicated cardiac critical care medicine specialists.
Pediatric lung transplantation surgeries typically take five to seven hours. Our cardiothoracic surgeons will make an incision that extends from side to side under the breastbone. Your child will be placed on cardiac bypass, her lungs removed, and the donor lungs implanted.
After lung transplant surgery
When your child’s lung transplant surgery is over, the surgeons will update you and your family on her current medical condition and surgical outcome. After surgery, your child will be brought back to the cardiac intensive care unit (CICU) with the following equipment in place:
- A breathing tube connected to a mechanical ventilator
- Chest tubes to drain fluid from the surgical site
- Small catheters inserted into blood vessels for monitoring and to deliver medication
- A catheter inserted through the urethra to the bladder to monitor urine output
In general, the breathing tube will be removed within a few days after surgery, and pain medication will be delivered through an epidural catheter.
Usually within one week of surgery, most children are ready to be transferred to the General Pulmonary floor. Chest tubes are usually removed a few days later and by two to three weeks after surgery, your child should be ready for discharge.
Recovery and rehabilitation
During the hospital recovery and rehabilitation phase of the transplant process, a lot of different people will be involved in your child’s care. including doctors, nurses, pharmacists, respiratory therapists, physical therapists, dietitians, social workers and child life workers. Again, we encourage you to ask questions about your child’s care, particularly if there is something you do not understand.
Following transplant surgery, infection control will be an important element your child’s care and is something on which all team members focus. We will discuss infection control measures with you to help avoid potential infection while your child is in the hospital and once she has returned home. We will ask all visitors about recent or current illnesses not to visit your child in the hospital until all symptoms have resolved. We will also limit the number of visitors to decrease the risk of infection.
Post transplantation rehabilitation includes a combination of chest physiotherapy, proper nutrition, medications, infection control and exercise with appropriate periods of rest. Discharge education will be provided by all team members about each step of the recovery process to help facilitate a successful transition to home.
Your child and your family will be involved in a number of activities designed to:
- Help your child recover from surgery
- Monitor the function of your child’s new lungs
- Prepare your child for going home
- Give you information about your child’s healthcare and lifestyle after discharge from the hospital
A daily schedule of expectations will be set up for you and your child to follow prior to discharge from the hospital. You will receive a binder, individualized for your child, which allows you to keep all educational materials, medication schedule and post-transplant schedule in one location.
At the time of discharge, we will arrange for appropriate planned follow-up appointments for up to one year after a lung transplant. This schedule will be created on an individual case basis.
Because rehabilitation and clinic schedules are intense during the first three to four weeks after discharge, we may ask you to stay in the Philadelphia area during that time.
Rejection and infection
The two most common complications in the early period following lung transplant are infection and rejection. In order for your child’s new lungs to be accepted by the body, his immune system must be suppressed with medicines. If the immune system is not suppressed enough, your child’s body may try to reject the new lungs. Also, with your child’s immune system suppressed, your child is more at risk for infections.
The transplanted lungs are foreign tissue and the body’s natural immune response is to reject them. To prevent rejection, your child must take immunosuppressive medication. This type of medication greatly decreases your child’s ability to fight off infection. As a result, post-transplant care focuses on monitoring your child for signs of infection or rejection and for any side effects related to the medication.
This requires frequent visits to the transplant clinic — at first every other week or so, extending to every three months by the end of the first year. If your child experiences a fever or any change in symptoms, we encourage you to contact our pediatric lung transplant advanced practice nurses, who are on call 24 hours a day, seven days a week.
The earliest sign of rejection is a decrease in lung function. You will be given simple testing equipment to monitor your child's lung function at home each day. In addition, surveillance bronchoscopies and biopsies are scheduled at 6 weeks, 3 months, 6 months, 12 months, and 18 months post transplant and as needed, depending on the patient's rejection history or infection risk.
After a lung transplant, infections caused by bacteria, viruses, or fungus are of great concern because the drugs your child is taking to prevent rejection increase the possibility of infections. Remember that the drugs your child is taking to suppress his/her immune system make it easier for infections to occur. Sources of infection include not only other people and things, but your child’s own body as well.
For example, bacteria in your body live in places like your mouth and digestive system and help you to breakdown and process food. Also, because the lungs are open to air it is easy to breathe in germs. The diagnosis of infection will be based on cultures taken of your child’s blood,sputum (phlegm,) urine, and other sources, as well as other tests including blood samples, x-rays, etc. In the hospital, steps to prevent infection include:
- A private room
- Limited number of visitors
- No flowers
- Hand washing
- Wearing a mask outside the hospital room, even when being transported to other places in the hospital
- Walking in the halls during quiet times (evenings and early morning)
- Close monitoring of your child’s temperature, heart rate and blood samples
While our outcomes are among the best in the world, survival rates for pediatric lung transplantation vary depending on a child’s diagnosis and general condition at the time of surgery. We will talk with you at length about your child's specific situation and projected prognosis.