We understand that you may have a lot of questions if your child is a candidate for a kidney transplant:
- How does it work?
- How long will my child need to be hospitalized?
- How will it affect my child in the long term?
We’ve tried to provide some answers to these questions, and when you meet with our experts, we can fully explain your child’s options.
What conditions are treatable with a kidney transplant?
A kidney transplant may be an option if your child has end stage renal disease (ESRD) and will not be able to live without dialysis or a transplant. Conditions that lead to ESRD include:
A transplant can offer your child a longer and healthier life, but the procedure, like any surgery, does carry its own risks. Your child’s transplant team will watch for these signs.
What is rejection?
Rejection is a normal - and, under most circumstances, healthy - reaction of the body’s immune system to a foreign object. When a new kidney is placed in your child's body, her immune system attacks it, not recognizing that it is useful. To prevent this, your child will have to take medications to weaken her immune system for as long as she has the transplanted kidney.
How can I tell if my child is experiencing an episode of rejection?
It’s not always easy, and many children have rejection without any symptoms at all. Your child’s transplant team will watch for these signs and show you what to look for. Some of the most common signs include:
- tenderness over the kidney
- elevated blood creatinine level
- high blood pressure
- decreased urine volume
Your child’s transplant team will tell you whom to contact if she shows any of these symptoms.
What medications are used to prevent rejection?
Your child’s transplant pharmacologist will work closely with the rest of the transplant team to determine the best medications for your child. Some of the most common ones are:
- mycophenolate mofetil
Anti-rejection medications work by suppressing the immune system, but that means that your child will be at higher risk for infections. Our team will continually monitor her health through blood tests and other exams.
Children's has been on the forefront of testing new medications that prevent rejection but have as few side effects as possible. Most often, a child is treated with a combination of three medications, but our newest research protocols have developed ways of using only one or two.
What infections will my child be susceptible to?
Some of the infections your child may be especially susceptible to include:
- oral yeast infections (thrush)
- urinary tract infections
- cytomegalovirus (CMV) or Epstein-Barr virus (EBV)
- respiratory viruses
This risk of infections is especially high during the first few months after the transplant. This is because patients need higher doses of anti-rejection medicines during this time, so their immune systems are especially suppressed.
What’s the long-term outlook for my child?
It’s impossible to say for sure, because each child is different, and living with a transplant is an ongoing process. On average, a transplanted kidney from a living donor functions for around 20 years, and a kidney from a deceased donor functions for around 10 years. When the new kidney stops functioning, in most cases the child goes back on a course of dialysis, and then she will go back on the transplant list. In many cases, we also perform an operation to remove the failed kidney.
Finding a donor kidney for your child
Where do transplanted kidneys come from?
More than half of the kidney transplants performed at Children’s come from living donors. A living donor is a family member or unrelated individual who is able to donate a kidney, and whose kidney is a good match for your child.
Transplanted kidneys can also come from deceased organ donors–adults or children who have become critically ill or injured and will not live as a result. Adults can agree to be an organ donor, and parents or spouses can also agree to donate a relative's organs.
In most cases only one kidney is transplanted, but in rare situations, a child may receive two kidneys from a deceased donor.
Who can be a kidney donor?
To protect everyone involved, there are a few restrictions in place. In order to donate a kidney, a potential kidney donor must:
- be at least 18 years old
- have a similar blood type as the recipient, and meet other matching criteria
- pass a comprehensive medical exam to make sure he or she is healthy enough to donate. This can take up to two or three months.
Can someone in my family donate a kidney?
Absolutely, provided that there is no medical reason that would prevent this person from donating, and that the individual is at least 18 years old. We never put a donor’s health at risk for the sake of the recipient.
Assuming that a potential donor is in good health, the only thing that would absolutely exclude him or her from being able to donate a kidney is having the wrong blood type. Here’s a brief overview of how the process works:
- We test the potential donors’ blood to determine the blood type. If their blood type is incompatible with your child’s blood type, they cannot donate.
- If the blood types match, we measure six antigens called HLA (human leukocyte antigens) in their blood. The more antigens they have that match your child’s antigens, the more successful the transplant is likely to be. Each parent automatically matches three antigens with their child (since the child inherits three from each parent).
- Your child’s doctor will explain the results of the antigen testing to you. He or she may recommend which person would make the best match, but it is the family who chooses who will donate the kidney.
- Whomever the family selects will begin the physical evaluation. This is a comprehensive process that takes two or three months. If we at any time find a reason why this person cannot donate (such as being prohibitively overweight or not being in sufficiently good health for major surgery), your family will choose a second person from the HLA match list to begin the physical evaluation, and so on.
Remember that in the vast majority of cases, there is no rush for a kidney transplant, since dialysis is almost always a treatment option. Your child’s doctor will be happy to discuss this process with you in more detail, and answer any questions you may have.
Is it safe to donate a kidney?
Yes. Kidney donors can live healthy lives with only one kidney, and part of the evaluation process is determining whether a potential donor is healthy enough to undergo a major operation.
Is it safe to receive a kidney from a deceased person?
Yes. The kidney organs are thoroughly evaluated by experts to make sure that they are suitable for transplant and do not have any diseases that could be transmitted to your child.
Who distributes deceased donor organs?
The Organ Procurement and Transplant Network (OPTN) is responsible for transplant organ distribution in the United States. They oversee the distribution of most types of solid organ transplants–in addition to kidneys, they also allocate livers, lungs, pancreas, hearts and corneas. As of 2010, the contract is held by the United Network for Organ Sharing (UNOS).
How does UNOS distribute kidney organs?
UNOS receives data about patients who need organ transplants from all over the country, and places them on a waiting list. Your child’s transplant team will send her data to UNOS, and update them as her condition changes.
Children waiting for a transplant receive “points” for several factors, including:
- how long they have been waiting
- the closeness of the match with an organ that becomes available
- where the transplant center is located in relation to the location of the donor
When a kidney from a deceased donor becomes available:
- A computer searches the list and ranks all candidates in order of their total number of points.
- The kidneys are offered to the candidates with the most points.
- If the match isn’t right or it’s not the right time for the patient to receive a transplant, the kidney is offered to the next candidate on the list, and so forth.
Q: Why does my child have to go back on dialysis? Why can’t she be put back on the list as soon as the new organ starts to fail?
A: As the new kidney loses its functionality, your child will again experience the symptoms of end-stage renal disease (ESRD). Her immune system will be compromised because of the immunosuppressants she has been taking, her blood pressure may be high, and she may be having problems absorbing nutrition. Time spent on dialysis allows us to stabilize her health–the better her health when she goes in for her next transplant, the better the chance that it will be successful.
Q: Will my child be able to return to school after the transplant?
A: Many of our children do quite well and are able to return to school in about two or three months after their transplant. While precautions need to be taken, we encourage them to lead full and happy lives– to go to school, play sports, spend time with friends and enjoy hobbies.
Q: How long is the wait for a donor kidney?
A: The national average for waiting time on the deceased donor kidney organ list is about six to twelve months for children. At Children’s, it’s even better–we’re part of the New England Region of UNOS, where children currently wait about three months for an organ. We know waiting is never easy and can direct you to resources and community support groups that will help you get through this difficult period
Q. What happens to the living donor after the operation?
A: Individuals who donate a kidney will be hospitalized for around three days after the surgery, but will require three to four weeks for full recovery. After that, they can return to their normal healthy lives without restrictions or limitations.
Q: What will happen after the transplant?
A: Your child will take medication to prevent the new kidney from being rejected for the rest of his life. We’ll also have follow-up appointments here at Children’s, so we can monitor his health, adjust his medications and stay in touch with your family. Since your child’s immune system will be compromised, your family may need to make some adjustments to protect his health.
Questions to ask your doctor
When you learn that your child needs a kidney transplant, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.
Lots of parents find it helpful to jot down questions as they arise – that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.
If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.
Some of the questions you may want to ask include:
- Is a kidney transplant the best option for my child? What other treatments might be available?
- How many kidney transplants have been done at this institution?
- How many have been done by the surgeon performing my child’s transplant? How long has he or she been doing this type of surgery?
- Are there factors other than my child’s health that go into the decision of whether to move forward with the transplant?
- How do your results compare with those of other transplant centers?
Teens and transplants
Being a teenager can be tough enough without having to cope with everything that comes with having a transplant. Along with the physical changes, teens also experience cognitive and emotional changes that influence their thoughts and behaviors, sometimes in unpredictable ways.
CHILDREN’S ADVOCACY PAYS OFF
Thanks to advocacy by Boston Children’s and other pediatric transplant programs, children under age 18 are now given priority on the kidney transplant list. The average waiting time for children awaiting transplant in the USA is about six to twelve months, compared to about four years for adults.
END STAGE RENAL DISEASE ACT
In 1972, Congress passed the End Stage Renal Disease Act, ensuring that Medicare will cover dialysis and kidney transplants for anyone with end stage renal disease who is eligible for social security, including children.