TEXAS CHILDREN'S PEDIATRIC LUNG TRANSPLANT PROGRAM
Frequently asked questions about
pediatric lung transplantation

Texas Children's Pediatric  Lung Transplant Program Lung transplant main History of program Treatment team Referrals and insurance Evaluation process Frequently asked questions Planning your stay in Houston Life after lung transplantation Resources

What diagnoses lead to lung transplantation?
The most common diseases that lead to lung transplantation are cystic fibrosis, pulmonary hypertension, bronchiolitis obliterans, interstitial lung disease and other rare disorders. 

Diseases leading to lung transplantation in infancy are surfactant protein dysfunction disorders, lung underdevelopment and some forms of maldevelopment of the pulmonary blood vessels. 

Some people with congenital heart disease develop pulmonary hypertension and have congenital heart defects that are not amenable to surgical correction. These children are potential candidates for pediatric heart-lung transplantation.

Who is a candidate for pediatric lung transplantation?
Infants, children and adolescents with severe lung or pulmonary blood vessel disease (usually some form of pulmonary hypertension) whose prospects for survival and quality of life are poor are considered potential candidates for lung transplantation. Patients with severe liver and lung disease also may be candidates for lung-liver transplantations. In limited circumstances, patients who also have severe heart problems may be candidates for heart-lung transplantation. 

Infants from the earliest months can undergo successful lung transplantation. Many times, these infants are usually quite ill and on ventilators at the time of referral. With a more immature immune system, infants are more susceptible to certain kinds of infection, but they also are somewhat less susceptible to organ rejection. 

Some children have survived more than 10 years since lung transplantation in infancy. 

What are the types of lung transplants?
Most infants, children and adolescents who are candidates will receive two lungs from a deceased donor who has been diagnosed with brain death. Organs are matched by blood type and the height of the donor and recipient. The standard operation involves three to four hours of cardiopulmonary bypass (a heart-lung machine) and the operation itself takes approximately six hours. On occasions, a single-lung transplant will be performed, though this is rare in children.

In unusual circumstances, heart-lung transplantation or lung-liver transplantation may be necessary. The heart and lungs of a single donor are implanted together while the child is on cardiopulmonary bypass. The same surgeons who perform the isolated lung transplantation also perform this procedure.

In the lung-liver scenario, the lung transplant is done first and then a second surgical team joins the operation and performs the liver transplant with the organs coming from the same donor. In this case, the operation can easily extend to 10 hours or more.

Why would we need to relocate to Houston to wait for lungs?
Only about 1,000 pediatric and adult lung transplants are performed in the United States annually, which equals three transplants per day for all candidates. Because of the uncertainty of when organs will be available, it is important for patients to live close to Texas Children's while waiting for a transplant.

Our team rarely has more than six hours – and often much less – after first notification of potential organs. During that short time, our team has to admit the child into Texas Children's, perform lab work, start an IV and administer critical medications. Families who live within a two-hour drive of Houston are able to stay at home with the understanding that there may be a number of calls and long drives that do not end with an operation.

What do I do when we get a call?
First, stay calm. Getting the child and yourself to the hospital safely is very important. We may call early to stop a tube feeding or halt a meal or snacks in anticipation of possible surgery. It is best to have a suitcase packed with essential clothing and sundry items.

What expenses are not likely to be covered by insurance?
Even the most generous insurers will not pay for all expenses associated with lung transplantation. Among uncovered expenses are co-pays for medications, certain therapy services and travel and hotel expenses for the many visits to Texas Children's that will be needed over the years.

Some insurers will provide a subsidy to help with living expenses while a parent and child are in Houston, but it rarely covers all the costs. Ronald MacDonald House is very nice and less than a mile from Texas Children's.

Should my family participate in fund-raising to subsidize the costs associated with transplantation?
To help cover the gap between what the insurer pays and what the family pays, some families choose to raise funds prior to relocation for transplantation. A few national organizations provide advice and help in fund-raising. Before committing to work with one, take the time to investigate its specific policies on how unspent funds are disbursed. In some cases, the funds you gather from your family, friends and community can default into the organization’s account in the event of your child’s death or if more is raised than needed.

Texas Children’s Hospital cannot be involved in the details of your fund-raising; however, our team is willing to help by providing information for your community newspaper or other public media.

What if our hometown newspaper or television station wants to do a story on our child?
Please refer all requests for interviews to Texas Children's public relations. As a rule, our physicians try to be available for interviews with the media and will provide facts that may help fund-raising or enhance the visibility of transplantation.

What immunizations should my child get and which should he or she avoid before and after transplantation?
It is important to prevent illnesses before and after transplant surgery, so all immunizations -- including chicken pox vaccine (Varivax®) -- should be given prior to listing for transplantation. Patients also should be vaccinated against pneumonia (Pneumovax®).

An annual influenza vaccine will be very important before and every year after the transplant for the whole family. Since the flu vaccine is only about 85 percent effective, if the patient or a family member begins exhibiting influenza symptoms, a course of influenza medication (amantadine or Tamiflu®) should be considered.

Live virus vaccines are the only ones that should not be given after transplantation. Live vaccines include measles, mumps and rubella (MMR), Varivax® and oral polio vaccine.

Will the procedure be very painful for my child?
One of the innovations introduced at Texas Children's Hospital is the routine use of a thoracic epidural catheter for administration of local anesthetic and strong pain medications into the area of the spinal canal where the incision is made. This provides effective relief of pain and helps facilitate removal of patients from the ventilator within a few hours after transplantation. It is important to minimize pain so that patients can take deep breaths and cough effectively. Our team will work with each child to ensure they receive the support and reassurance they need.

What can we or you tell our child to allay his or her worries about lung transplantation?
Texas Children's pediatric lung transplant team is committed to treating patients and families with honesty and compassion. When working with children, we take an age-appropriate approach in answering their questions and try to answer all questions. However, our team does not always have all the answers to all questions about transplantation, especially those involving wait time, graft function, recovery and survival.

Why do you have to do so many bronchoscopies after transplantation?
In the first year after transplant, we usually perform a bronchoscopy on patients about six to eight times. It's the only way to know if a child’s body is rejecting transplanted lungs.

The procedure is done in a special suite at the hospital. It takes about 30 minutes, and the stay in the suite is less than four hours. During the procedure, a healthy dose of intravenous sedation is given, and a special instrument is used to biopsy deep within the lung. About six tissue samples are taken with each procedure. The location from which the biopsies are taken may be alternated from procedure to procedure.

The bronchoscopy helps us see the appearance of the largest bronchial tubes, including the presence of mucus, and learn the possibility of infection by instilling sterile salt water solution and withdrawing it for lab tests.

The frequency of the bronchoscopy procedure decreases after the first year after transplantation.

Can we have a living-donor lung transplant operation done at Texas Children's?
In 1990 Dr. Vaughan Starnes developed the surgical technique for implanting the lower lobes of two healthy adult donors into the chest cavities of a smaller recipient in place of both diseased lungs. Dr. Starnes still performs this surgery at the University of Southern California in Los Angeles. Texas Children's Pediatric Lung Transplant Program currently does not offer living-donor lung transplants.

What age does a child have to be to have a lung transplant at your hospital?
Let us consider infants first. Most infants who might need a lung transplant are very ill and on mechanical ventilators. Donors for these infants are uncommon and rarely less than two months of age and therefore usually over 12 lbs in weight. This makes offering a lung transplant to infants under 10 lbs of age very difficult. If an infant is so sick that they are on ECMO (extra-corporeal membrane oxygenation or a heart-lung machine), our program like virtually all others in the USA will not accept such infants until and unless they can be weaned off ECMO and stabilized enough to be transported to our facility.

On the other edge of the age spectrum, we accept referrals of patients up to 18 years of age. Above that age, we occasionally accept referrals but only under special circumstances. Texas Children's Hospital is a pediatric institution and we believe that young adults are best cared for by physicians trained in their care. We do transition lung transplant recipients to adult lung transplant facilities usually sometime between the ages of 18 and 21 years. As a general rule, we transfer patients only when they have a relative clinical stability so that the burden on the accepting team is not so great.

If my child is certain to die without a transplant, is that not a good enough reason for him or her to have a transplant without question?
Organ transplantation is an expensive procedure and there are not enough organs to go around. Therefore, as a rule, suitable candidates for transplantation do NOT include all patients dying of single organ failure but that subset of patients who also have a good chance of surviving and living a near normal life.