The Transplant Journey | Overview
A transplant isn't just a surgery. It's a journey.
Transplantation is also the beginning of a long partnership. 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.
A transplant is a journey that lasts a lifetime. There is often uncertainty, sometimes anxious waiting, at times extended hospital stays and then an adjustment to life after the surgery is over — but our care and support will never waver. We're here to continuously guide you every step of the way.
Evaluating your child for transplant
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 begin to teach you and your child about the transplant process, and the results of the tests 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, 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 us a clear picture of overall health. You will also visit with other members of the care team, such as the social worker, child life specialist and nutritionist to evaluate your child’s emotional and physical readiness for the journey ahead.
Results and next steps
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:
1. The evaluation has identified that a transplant is not possible
2. The evaluation has identified there are other treatments or medications available that should be considered prior to transplant.
3. 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 oversees the allocation of many different types of organs.
How the list works
Children waiting for a transplant receive “points” for several factors, including how long they have been waiting, severity of the recipient’s condition, the closeness of the match with an available organ and the location of the transplant center in relation to the donor location. Each organ has slightly different criteria for matching. 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. For more information about the UNOS list, visit http://www.unos.org.
Preparing your child and your family
Waiting is often the most difficult stage of the journey since you don’t know just how long the wait will be, 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 your child remains a transplant candidate. It is important for your child and your family to maintain a sense of normal, eat healthy foods and stay as active as possible to help your child prepare for surgery — and recover after surgery.
Be ready. A donor may become available anytime, day or night. When we contact you to come to the hospital timing is critical, so you need to arrive as quickly as possible. We often need to have your child ready to go into the operating room within hours of your arrival.
The surgery: preparation and recovery
Once you’ve been notified a donor organ has been found, things move very quickly. Your surgeons, anesthesiologist and nursing staff will prepare you for the upcoming procedure. It’s normal to be nervous, but you can rest assured — your child is in good hands. Our transplant team is among the most skilled and experienced in the world and will make sure you and your family are comfortable and informed about the progress of the transplant throughout the surgery.
Recovery and post-surgical care
Depending on how closely your child needs to be monitored following the surgery, he or she 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.
We know a transplant operation can be an uneasy time. Remember, your child’s entire transplant 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 under the watchful eyes and safe care of your transplant team can be daunting. Don’t forget, this is a shared journey. We are with you every step of the way and will equip you with all the information you need to prepare for the return home. Our goal is to help your child and your family live as full and normal a life as possible after transplant. This will take time but will remain our goal.
We will want to keep a close eye on your child to make sure everything is going well. Follow-up visits are essential. We will check your child’s medicine and — if needed — adjust the dosage, look for and treat any complications that might arise and check-in with you and your family.
For the first month or so, we will want to see your child frequently — typically twice a week. Over the first year, this decreases to once a week, then every other week, then once a month, then every two to three months. 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. We will work closely with you and will provide patient/parent discharge education information, which will be developed specifically for your child.
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.
Our goal is 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 many medication adjustments may need to be made within the first few months.
It is during this period that rejection most often occurs. It can be identified by suspicious symptoms or routine check-ups. A number of 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.
The challenges of compliance
As your child begins to manage his or her 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 for living a long and happy life. Learning this skill takes many years.
Taking charge of your own health is a journey that your transplant team will encourage your child to start 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:
- teen events to promote peer interaction
- 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 support or our support. It means your child will take control. The transplant team cared for your child before receiving a transplant and has worked with you and your family to keep your child healthy since.
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.