If your child has been diagnosed with a ureterocele, the doctors and care team at Boston Children's Hospital understand you may be worried. We specialize in family-centered care, which means that from your first visit, you¹ll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs.
How does Children's treat ureteroceles?
Treatment for ureteroceles depend on when they're diagnosed and how severe your child's symptoms are.
If a ureterocele has been diagnosed prenatally
If a routine prenatal ultrasound has shown the presence of a ureterocele, your child's doctor will recommend a sequence of imaging tests after she is born to investigate the anatomy of her urinary tract and the function of her kidney.
Based on how large the ureterocele is and how it is affecting the kidney, your doctor will either continue to observe her condition or begin treatment:
- continued observation is the most common result. You'll set up a follow-up appointment for another set of imaging studies in a few months.
- a course of daily preventive antibiotics (to combat urinary tract infections) — In this case, your child would also return in several months for another set of imaging studies.
- surgery to remove the ureterocele — In rare and severe cases, your child's doctor may recommend a surgical procedure early in infancy to drain the ureter and remove a large ureterocele that is putting your child at risk for significant kidney damage.
- If your child's kidney has already been damaged, the surgeon may also remove the part of the organ that is no longer functioning in an operation called a nephrectomy.
- In other cases, the ureterocele may be removed and the ureters reattached to the bladder to allow normal flow of urine, and prevent reflux.
How often will my baby need to be seen?
Infants may be seen every 3-4 months. A series of imaging studies gives us a sense of the size and severity of the ureterocele. If we're reassured that it's not causing any harm to your child's kidneys, we'll begin to spread the visits out to every 6-12 months depending on his age.
If a ureterocele has not been diagnosed prenatally, you might not know about it until your child has recurrent urinary tract infections or becomes sick as a result of an obstructed urinary system.
If that's the case for your child, your doctor may prescribe antibiotics. If they don't start helping quickly, we may admit your child to the hospital and administer more antibiotics and IV fluids. In severe cases, we'll drain the ureter to stabilize your child, and then perform the imaging studies mentioned above to assess her condition and decide how to proceed with observation or treatment.
Are antibiotics safe to take for long time?
Yes. The low-dose, preventive antibiotics are given once a day and have helped thousands of children for many years with very few severe side effects. There are some risks associated with any medication, but we believe that the benefits of preventing UTI (and kidney scarring) in children with more severe ureteroceles outweigh any small risks from taking the antibiotics for long periods.
Don't children become “immune” to the antibiotics?
Children do not become immune to antibiotics. Their immune systems remain fully functional and aren't changed by being on these medications. However, the bacteria that live on and inside of human beings can become resistant to certain antibiotics through prolonged exposure. Since most UTIs are caused by the germs that live on us, this can be a problem.
My child needs surgery. What do we do next?
Should your child's doctor deem that he need surgery, Children's surgeons have vast experience in both traditional open and minimally invasive robotic-assisted surgical procedures. You'll meet with your child's doctor and work together to design a customized plan of treatment that fits your child and his condition.
Is there anything we need to do to prepare for the surgery?
Your child's doctor will give you a packet of information about what to do and not do in the days leading up to your child's surgery. These instructions include how long before the surgery your child should refrain from eating and drinking, when you should arrive at the pre-op clinic, what you should bring and how long you should expect to remain in the hospital.
What are the different options for surgical procedures?
If your child's doctor decides that your child should have a traditional open procedure, the incision will be larger and your child will stay in the hospital for one or two more days, but the results will be very similar.
In certain cases, the procedure can be performed through a small telescope inserted through your child's urethra, and no incision is needed. As you might expect this procedure has a rapid recovery, but not all children will be helped by the endoscopic technique.
At Boston Children's Hospital, we can perform state-of-the-art laparoscopic and robotic surgery.
- Your child's surgeon will insert instruments into his abdomen through small punctures, which are then used under the guidance of a small camera, also inserted through an incision.
Which method is better?
The choice of surgical approach is highly individual and depends very much on the details of a child's condition. Traditional open surgery is a time-tested method of correcting a ureterocele with very few complications. Laparoscopic surgery reduces the size of the incision, and may reduce the amount of pain and the time your child will need to stay in the hospital. Your doctor will discuss with you which option is better for your child.
How might a ureterocele affect my child's long-term health?
If your child has a large ureterocele that could cause damage to her kidney, surgery may be necessary. But even large ureteroceles can typically be effectively treated – and your child should go on to achieve normal urinary function.
What makes your approach unique?
A ureterocele is a pediatric condition, so it's important that your child be seen at a dedicated pediatric hospital. The specialists in the Department of Urology at Children's have years of experience managing this sometimes subtle and rare condition.
Can ureteroceles be prevented?
No. Ureteroceles are congenital conditions. However, the urinary tract infections that are often associated with ureteroceles may be prevented with antibiotics.
Coping and support
We understand that you may be worried about your child's ureterocele. But there are lots of resources available for your whole family—within Children's, in the outside community and online.
Children's resources for families:
Advanced Fetal Care Center: The AFCC at Children's is set up to offer diagnosis and ongoing care for a mother carrying a baby with a confirmed or suspected congenital anomaly.
Patient to patient: Want to talk with someone else whose child has been treated for a ureterocele? We can put you in touch with other patients who have been through similar experiences and can share their stories.
On our For Patients and Families site, you can read all you need to know about:
- getting to Children's
- navigating the hospital experience
- resources that are available for your family