Thymus Transplant

Thymus Transplant

Innovative Procedure for DiGeorge Syndrome

For More Information

Duke Children’s Hospital is the only U.S. medical center offering thymus transplantation to infants born with complete DiGeorge syndrome. This rare immune disorder is characterized by the lack of a thymus, the small gland near the heart that generates infection-fighting T cells. We strive to give your child the best chance to develop a strong immune system for a healthy life.

Duke Children's Hospital

Learn more about Duke Children's Hospital in Durham, NC.

Understanding Thymus Transplantation

What Is the Thymus?
The thymus is like a schoolhouse attended by stem cells, immature white blood cells from bone marrow that develop into functioning T cells. After about six months, a small percentage of the developing T cells leave the thymus to become normal T cells that protect the infant by fighting off infection and not attacking the infant’s organs. 

Tissue Removed During Heart Surgery
When the thymus is present at birth, it is located on top of the heart. If an infant with a thymus requires heart surgery, the surgeon may remove a portion of the thymus to operate on the part of the heart that is underneath the thymus. This removed thymus tissue may be used for transplantation after permission is obtained from the infant’s parent(s). 

What Is Thymus Transplantation?
Thymus transplantation is an investigational procedure that uses thin slices of thymus tissue to build the immune system of an infant born without a thymus. This can occur when a child is born with complete DiGeorge syndrome, a genetic disorder that can also cause other medical concerns, including a heart defect and/or calcium problems. Some infants with DiGeorge may have problems with vision and hearing, blockage of one or both nasal passages, and abnormal ears.

If Successful, Infection-Fighting T Cells Develop
The donor thymus used for thymus transplantation is cut into thin slices and kept in the laboratory while testing is done on blood from the donor infant and their mother. The testing ensures the thymus donor does not have an infection that could harm the infant with complete DiGeorge syndrome. The thin slices of thymus tissue are then implanted into the thigh muscle of the infant born without a thymus who has complete DiGeorge syndrome. Tiny blood vessels called capillaries grow from the muscle into the thymus tissue, providing oxygen and nutrients. If the procedure is successful, the infant develops T cells that can fight infections within about six to nine months. 

Physician Referral Required

A written physician referral is required for your child to be considered for the thymus transplant.

The Thymus Transplant Process

Committee Review

Duke’s Thymus Transplantation Clinical Review Committee will determine whether your child is a candidate for transplantation. Once the committee agrees that your child could benefit from a thymus transplant, a financial review is performed. Depending on insurance and the state where you live, either your referring doctors or the Duke team will request authorization to perform the thymus transplant. Because thymus transplantation is still an investigational procedure, many insurance companies initially deny authorization. The Duke team and your doctors then file an appeal; we have been very successful with appeals so far. After authorization is obtained, an agreement is signed to allow your child to come to Duke. You will be informed when this is completed. The committee determines the order in which children come to Duke for transplantation.

Understanding the Risks and Benefits

After the committee review, you will receive a consent document that will be reviewed with you so you understand all the procedures, risks, and benefits before you come to Duke for the transplant.

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Once Approved for Thymus Transplant

While Your Child Is at Duke

Depending on your child’s clinical condition, your child may be able to be an outpatient for most of the time you are in the Durham area. If your child needs hospitalization or care in a Pediatric Intensive Care Unit, your child will be an inpatient while at Duke. It is expected that a parent or other adult will stay with the child 24/7 if they are in the bone marrow transplant unit or a minimum of eight hours a day in other units.

Planning for Housing and Expenses

Unfortunately, we cannot provide funds for food or housing for adult caretakers while a child is in the Durham area or in the hospital, or for supplies such as diapers. Also, we recommend that you talk with your insurance company about whether there will be co-pays for clinic visits, and whether outpatient medications can be obtained from the Duke Children’s Pharmacy or if family members back home will have to pick up prescriptions from a local pharmacy and send them to you by express mail. If your child requires tube feeding or other home health supplies, please be aware that these items may not be covered by insurance. You may wish to consider fundraising for such expenses before coming to Duke. 

Waiting for Thymus Tissue

After coming to Duke, your child will undergo a complete medical evaluation with blood work and imaging tests. At the same time, we start screening for thymus tissue. When thymus tissue becomes available, we begin to process the tissue and test for infections. While most organ transplants require blood type matching between recipient and donor, children under two years of age usually haven’t developed antibodies against other blood and tissue types, so matching is not typically required. You will be notified when suitable tissue is available for your child. 

Thymus Transplant Procedure

Thymus transplantation is performed in the operating room. A pediatric general surgeon makes a cut in the skin to expose the thigh muscle. Between 10 and 40 thymus tissue slices are put into little pockets created in the thigh muscle in one or both legs. After surgery, your child goes to the recovery room and then to the Pediatric Bone Marrow Transplant Unit for care.  

Immunosuppression

About half of children who come to Duke have no T cells and do not need immunosuppression. If they are outpatients, they may only be in the hospital for one to three nights after the transplant. The other half of children usually need to be on immunosuppression medication for nine to 12 months after transplantation. They also need medication before the transplant to prevent uneducated T cells from attacking the thymus. These children are usually in the hospital for about 10 days. 

After Thymus Transplantation

If your child is stable, he/she will return to the care of your referring immunologist/facility one to two weeks after thymus transplantation. Our thymus transplant team maintains close consultation with the referring medical team during the first year as T cells are developing.

Protecting Your Child from Infection

Your child will need to continue in isolation for about one year after transplantation to protect him or her from contracting infections. Your immunologist will send blood to Duke about every three months for the first year after transplantation to monitor the development of infection-fighting T cells -- a process that may take six to nine months. 

Thymus Transplantation Expertise

More Than 90 Thymus Transplants Performed at Duke
Since developing thymus transplantation in 1992, Duke pediatric immunologists have performed more than 90 thymus transplants, primarily in infants with complete DiGeorge Syndrome. The overall survival rate is 71 percent.

Our Team Trained the UK Team
Our pediatric immunology team trained specialists in the United Kingdom, currently the only other location in the world where thymus transplants are performed.

Compassionate Care
Our thymus transplant team includes many specialists who provide compassionate care to your child and work closely with your child’s referring doctors to ensure individualized care. We guide you through the process and support your child’s recovery.

Dedicated Researchers
Our pediatric immunologists are also researchers who are constantly striving to better understand disorders such as complete DiGeorge syndrome and the long-term outcomes for children who have undergone thymus transplantation. This work helps guide our approach to thymus transplantation.

Best Children's Hospital in NC

In addition to being among the best in the country, Duke Children's Hospital & Health Center is proud to be nationally ranked in nine pediatric specialties.

Family-Friendly Resources

You will need to stay in or near Durham for about two months for your child to obtain the thymus transplant. These Duke Children's resources may be helpful.
Reviewed: 05/21/2018