The Transplant Journey | Overview
A transplant isn't just a surgery. It's a journey.
Transplantation is also the beginning of a long partnership that lasts a lifetime. You, your child, and your family will become a part of the Boston Children’s transplant team, and together we will pursue the best possible outcome for your child.
There is often uncertainty, anxious waiting, extended hospital stays, and an adjustment to life after the surgery is over — but know that our care and support will never waver. We're here to continuously guide you every step of the way.
When transplant might be a treatment option for your child, the first step in the journey is an evaluation. It is an opportunity for the transplant team to get to know your child, and an opportunity for you and your family to ask questions and address concerns.
The evaluation also is a time for education. The many tests and consultations will be your starting point to teach you and your child about the transplant process and that the results of the tests we run will determine if a transplant is the optimal path of care.
The evaluation takes place over the course of several days and may be done as either an inpatient or outpatient appointment, depending upon the health of your child. During the evaluation, your child will undergo a variety of tests and meet with members of the Pediatric Transplant Center to give a clear picture of overall health. You will also visit with other members of the care team, such as the pediatric transplant social worker, child life specialist, and a nutritionist to evaluate your child’s emotional and physical readiness for the journey ahead.
After the evaluation, the entire transplant team will meet to decide if your child is a suitable candidate for a transplant. Our multidisciplinary approach to care ensures that every potential treatment option is reviewed and given thoughtful consideration. Generally, there are three possible recommendations:
- The evaluation has identified that a transplant is not possible.
- The evaluation has identified there are other treatments or medications available that should be considered prior to transplant.
- The evaluation has identified that transplant is a treatment option.
In all of these situations, the transplant team will work with you and your child’s physicians to develop a coordinated care plan.
Waiting for an organ
Once you and the transplant team decide a transplant is the best option, your child will be placed on the United Network for Organ Sharing (UNOS) list as a potential transplant recipient. UNOS is responsible for organ distribution for transplant in conjunction with the local Organ Procurement Organization (OPO), and it oversees the allocation of many different types of organs.
How the list works
Children waiting for a transplant receive “points” for several factors. These points include:
- how long they have been waiting, severity of the recipient’s condition
- the closeness of the match with an available organ
- the location of the transplant center in relation to the donor location
Each organ has slightly different criteria for matching with a recipient. We will send your child’s data to UNOS and update them with condition changes that may affect your child's spot on the waiting list.
When an organ becomes available, a computer searches the list and ranks all candidates in order of their total number of points. The organ is offered to the candidate with the most points. If the match isn’t right, or if it’s not the right time for the patient to receive a transplant, the organ is offered to the next candidate on the list.
Preparing your child and your family
Waiting is often the most difficult stage of the journey, but your transplant team is here to offer our physical and emotional support.
While you wait, we'll work closely with you to monitor your child and make certain that they remain a transplant candidate. Remember that maintaining normalcy, eating healthy, and staying active to help prepare for surgery and for recovery is important for your child.
A donor may become available anytime. When we contact you to come to the hospital once a match has been made, timing is critical — you will need to arrive as quickly as possible. We often go into the operating room within hours of your arrival.
The surgery: preparation and recovery
Once you’ve been notified that a donor organ has been found, things will move very quickly. Your care team will prepare you for the upcoming procedure.
Recovery and post-surgical care
Depending on how closely your child needs to be monitored following the surgery, they will go to either the Intensive Care Unit or the Transplant Unit. During this time, our team of transplant pharmacists, dietitians, nurses, and others will educate you and your family on all aspects of caring for your child after the operation. This will include information about post-transplant medications, activity, diet, and any other specific instructions.
Your child’s entire care team will be available to answer questions, guide you throughout hospitalization, and ensure you are prepared to manage and maintain your child’s health at home.
Life after transplant
Going home after your child has been cared for by their transplant team can be daunting. We are with you every step of the way, and we will prepare you with all the information you need for the return home.
Our goal is to help your child live as full and normal a life as possible after transplant. This will take time, but it will always remain our goal.
We will want to keep a close eye on your child to make sure everything is going well, which means follow-up visits are essential. We will check your child’s medicine and — if needed — adjust the dosage and look for and treat any complications that might arise.
For the first month or so, we want to see your child frequently, typically twice a week. Over the first year, this decreases as time goes on. Generally, after a year we will see your child every three to six months.
Following surgery, your child will need to take several medications daily. When a new organ is placed in your child's body, the immune system does not recognize its intended purpose. It sees the organ as something foreign and will try to fight it off. This is normal; however, in the case of a transplanted organ, we want to prevent the immune system from doing its job. This means your child will have to take immunosuppressants — also known as anti-rejection medications — to weaken the immune system, keep the organ safe, and prevent the body from fighting off the new organ.
You will be taught your child’s medication schedule, proper administration of the medication, monitoring for side effects, and monitoring for complications following the surgery.
Although it sounds scary, rejection is a normal reaction of the body’s immune system to a foreign object, and it may occur following a transplant.
We aim to give your child adequate immunosuppressants to prevent rejection, while using the lowest dose possible to prevent side effects. Finding a good balance takes time, and medication adjustments may need to be made within the first few months.
Rejection most often occurs in the first few months. It can be identified by suspicious symptoms or routine check-ups. Several tests are performed during the follow-up visits to help identify rejection, determine the effect on the transplanted organ, and to formulate a treatment plan. Sometimes it’s necessary to re-admit your child to the hospital to control the rejection process.
Since the immune system will be less active, your child will be at a higher risk of infection. Anti-infection medications will be given to prevent or fight infections, and other medications may be given to control side effects.
Transition care for the teen years
The teen years are a critical time for transplant recipients. As they make the transition to adulthood and become increasingly independent, teens need to take more responsibility for medications, follow-up appointments, and other care.
As your child begins to manage their own care and medical decisions, following recommended treatments or medications may be challenging. Our transplant team knows how to motivate and communicate with children as they transition to adolescence and will help stress the importance of compliance. We will work with the entire family to set expectations and identify and assess any potential adherence risks.
A proactive role
Managing your own health — including the health of a transplanted organ — is important and may be difficult for your teen.
The transplant team encourages your child to start becoming their own healthcare advocate at age 12. That way, in the late teens or early 20s, your child will be ready to care for themselves. This includes choosing a transplant center that specializes in adults and checking in with that team on a regular basis.
In the years ahead, we will make sure your child has the tools they need to understand and take responsibility for their care including:
- hands-on models and activities
- computer games
- website recommendations
- questionnaires to assess learning needs
Transition to adulthood
Becoming an adult doesn't mean your child will lose your family’s or our support. It means your child will take control of their own health.
At the end of the transition road, your child will be an adult, who has taken charge of all of their health care needs. Your child will have a working knowledge of the specialized health care required to take care of their transplant throughout life.