Kidney Transplant in Children
A kidney transplant is an operation in which your child receives a normal kidney from another person to replace his failed kidneys. The kidney may come from a deceased organ donor or from a live donor who is either related or nonrelated.
Your child will need to go through an evaluation process. The evaluation will give a clear picture of your child's overall health and also help in determining whether kidney transplantation is truly the best option.
The pre-transplant evaluation is coordinated through our transplant office and is usually done on an outpatient basis. Before the evaluation, please make sure:
- You have a copy of your child's immunization records. Check with your child's primary care provider on obtaining any further immunizations, if needed.
- Your child has visited the dentist within the last year.
- Your child has seen an optometrist or ophthalmologist within the last year.
- Your child has had a tuberculosis test (also called a PPD) performed by his or her primary care doctor within the last year.
You'll also need to attend the following meetings:
- A family meeting to discuss the transplant with the transplant kidney doctor, transplant surgeon and transplant coordinator
- A family meeting with the social worker and psychologist to discuss transplant issues
- A financial/insurance meeting with the Department of Social Work to make sure you're aware of the many different resources available to you when your child receives a kidney transplant
- An educational session with the transplant coordinator
During the evaluation, your child will undergo blood tissue typing and crossmatch (we need this information to find a compatible kidney for your child). Depending on what the transplant team decides at or after the family meeting, your child may also undergo additional evaluations with other teams at CHOP, including urology, cardiology, pulmonary, and orthopedics.
If the team determines a kidney transplant is appropriate for your child, the search for a new kidney will begin. A kidney may come from a living donor or a deceased donor.
The kidney transplant waiting list
If there is no living donor available, a deceased donor will be used for your child’s kidney transplant. Once your child has completed the evaluation process and we've determined a transplant is the best option, he will be placed on the United Network for Organ Sharing (UNOS) waiting list to receive a kidney transplant from a suitable donor.
Kidney matching system
A new kidney matching system went into effect in late 2014. This new system should help more people have longer function with their transplanted kidney.
People who are expected to need a kidney for the longest time (younger kidney candidates) will be matched more often with kidneys that have the longest expected function. Groups of people who are hard to match with kidneys, based on their blood type or immune sensitivity, will also get additional priority.
Matching for pediatric kidney candidates (younger than 18) is now based on scores given to the kidney. Every kidney offered for a transplant will have a Kidney Donor Profile Index (KDPI) score. This is a percentage score that ranges from zero to 100 percent. The score is associated with how long the kidney is likely to function when compared to other kidneys. A KDPI score of 35 percent means that the kidney is likely to function longer than 65 percent of other available kidneys.
Pediatric kidney candidates will have priority for the 35 percent of kidneys that are likely to function the longest.
Candidates older than 18 are matched according to Estimated Post-Transplant Survival (EPTS) score. This is a percentage score that ranges from zero to 100 percent. The score is associated with how long the candidate will need a functioning kidney transplant when compared with other candidates.
While this new matching system should shorten time spent on the wait list for many kidney candidates, it's impossible to know for sure how long your child will need to wait for the kidney. Learn more about the kidney matching system on the UNOS website.
When to contact the transplant team
After your child's kidney transplant, you should notify the transplant team if your child has:
- A temperature greater than 101.0 degrees F or 38.5 degrees Celsius
- Decreased urine output
- Increased swelling of the legs, hands or feet
- Pain or tenderness of the transplanted kidney
- Pain, blood, odor or burning during urination
- Coughing or shortness of breath
- Nausea or vomiting
- Flu-like symptoms such as fever, chills, aching in your joints and muscles, or a generalized sense of "not feeling well"
- Any redness or drainage from the abdominal incision
- Any exposure to illnesses, such as the flu or chicken pox
Kidney transplant follow-up care
After your child comes home from the hospital, he will need frequent visits to the transplant clinic. Because the first year is the time in which rejection and other problems are most likely to occur, it's very important that the transplant team closely monitors your child.
A typical schedule of outpatient clinic visits might be:
- First 6 weeks after transplant: 2 visits/week
- 6 to 12 weeks after transplant: Once a week
- 3 to 6 months after transplant: Every other week
- 6 months after transplant: Monthly visits
For the first six weeks we recommend that your child rests, avoids lifting anything heavy and avoids large crowds (eg, crowded restaurants, movies, music concerts, etc.). Therefore, during this time your child should not attend school. Our social work department will make arrangements so that your child can continue his studies at home.
When your child is able to return to school, with consent, your school can be informed of his condition and asked to alert parents or guardians of illnesses, such as chicken pox, measles or the flu. If this occurs, please contact the transplant program to determine if any precautions are necessary.
Please use good judgment when it comes to situations that may cause your child to be exposed to possible infections. Try to avoid close contact with people who are ill. The common cold is not a threat; however, if a cold does not go away after about three weeks, you should visit your primary doctor.
Swimming in chlorinated pools or even the ocean is acceptable; however, many lakes, streams and ponds can harbor bacteria that may make you extremely ill. Hot tubs and jacuzzis also may harbor bacteria. Use common sense and if in doubt, please ask.
Some of the medications your child will be taking will make her more sensitive to sun exposure. We recommend that sun protection lotions with SPF 15 or greater be used for any sun exposure.
Now that your child has had a kidney transplant, each time he visits the dentist for dental work of any kind he must take an antibiotic before the visit. Your dentist, your primary physician or our office may prescribe this.
Diet and exercise
After a kidney transplant, some patients may require a low sodium diet. Others may be prone to weight gain and they should avoid high calorie foods and concentrated sweets such as sugary drinks or candy. It is recommended that you speak with our nutritionist if you have any specific questions or concerns.
After the first six weeks, your child may resume or begin an exercise program. There are, however, certain activities that should be avoided. Your child should not participate in high contact sports of any kind. Some examples of these activities are sports such as karate, boxing or football where there is a chance of injuring the new kidney. Please talk with us about specific sports in which your child wishes to participate.
We ask that you call before your child takes any medication not prescribed by us, as they may interact with the transplant medications that are prescribed. Also, you should not give your child any Ibuprofen or Advil products as they may injure his transplanted kidney.
Depression and anxiety
We understand that there is quite a lot to learn and take care of when your child has received a transplant. Please let us know if you need to talk to someone. A social worker or counselor is always available.
During the normal business day (8:00 a.m. to 5:00 p.m.), call our team at 215-590-3913. If necessary, they will page one of the transplant coordinators. If you have a general question, please leave a message on the voicemail and someone will get back to you by the end of the day under normal circumstances.
After normal business hours or weekends or holidays, page the Renal Doctor on call. In emergency situations, there is always a Renal Transplant Coordinator on-call, who can also be reached through the hospital operator at 215-590-1000 if you are unable to reach the physician on-call.