Reconstructive Pelvic Medicine

Seattle Children’s is a national leader in caring for children and teens with complex pelvic conditions. 

Seattle Children’s has 1 of the most experienced RPM programs in the United States. Our co-director, Dr. Caitlin Smith, has expertise that is unique in our region and rare in the nation. She has completed a 2-year intensive training with Dr. Marc Levitt, the world’s leading pediatric colorectal surgeon. To improve care for children with pelvic disorders, Seattle Children’s helped start a worldwide research group. Read about the Pediatric Colorectal and Pelvic Learning Consortium (PCPLC).

Our patients range from newborns who need urgent surgery to young adults who need long-term follow-up. Contact us at 206-987-1240 for an appointment, second opinion or more information. You do not need a referral from your doctor.

• Many experts, 1 program

  We have 1 of the only multidisciplinary RPM programs in the nation. We combine the knowledge and skills of experts in:

  • Pediatric surgery
  • Digestive system (gastroenterology)
  • Urinary tract and reproductive system (urology)
  • Female reproductive system (gynecology)
  • Using imaging studies to diagnose and treat disease (radiology)
  • Surgery on the brain or spinal cord (neurosurgery)
  • Nutrition
  • Social work
  • Physical therapy
  • Child life
  • Studying blood and tissue to diagnose, track and treat disease (pathology)
• Team approach for complete care

   

  • Our team approach means your child gets care each step of the way from experts who know your child’s full treatment plan.
  • We arrange your clinic visits so your child can see all the providers they need in 1 day, in 1 place, instead of having to make separate visits.
  • The team meets before clinic to discuss the needs of each patient coming in that day. We meet throughout the month to discuss and prepare for upcoming visits and to be sure we have all plans in place.
  • We have 1 of the only teams in the country skilled and experienced in repairing cloaca, a rare condition that affects some girls at birth.

   

• Personalized care across all stages of life
  • Many of our patients come to us as newborns. We also treat many older children, teens and young adults, including those who had surgery somewhere else.
  • Care starts before birth if a problem is found during pregnancy. Finding problems early gives you more time to make decisions and plan care. Learn how our Fetal Care and Treatment Center can help.
  • For newborns who need complex care, we have the state’s first Level IV Neonatal Intensive Care Unit (NICU), the highest level.
  • Each child is different, and children’s needs change as they grow and develop. We work closely with your family through all stages of life. Over time, concerns may include toilet training, puberty, sexual function and childbearing.
  • We support you and your child as they transition to an adult healthcare provider, to be sure your child keeps getting the care they need.
• Dedicated to your child’s quality of life

  Pelvic problems can be embarrassing or uncomfortable to deal with. We partner with you to make sure your child or teen feels safe and understands what is happening. Along with the most advanced medical and surgical treatments, Seattle Children’s offers services and support to help your child live fully and actively. These include:

  • Helping you build a community of support. We connect you with other families through social media, camps, support groups, the Pull-thru Network and other resources for kids with similar conditions.
  • Mental and emotional health support to help your child work through their feelings and learn coping skills.
  • The only Bowel Management Treatment Program  for children in our region. The 1-week program helps children prevent soiling accidents and be more active and independent.
  • The only pediatric Motility Program in the Pacific Northwest, for children who have problems with how food moves through their digestive tract.
  • An expert Differences in Sex Development (DSD) team that gives compassionate, evidence-based care for babies, children and teens with all types of DSDs.
• Support for your whole family
  • We take time to explain your child’s condition and answer all your questions. We help you fully understand your treatment options and make choices that are right for your family. As your child gets older, we include them in decisions about their care.
  • Our doctors, nurses, child life specialists and social workers help your child and your family through the challenges of your child’s condition.
  • To help us know your family’s needs and measure our success in meeting them, we ask you and your child to fill out surveys about quality of life.
  • At Seattle Children's, we work with many children and families from around the Northwest and beyond. We can help with financial counseling, schooling, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.

• Cloaca

  In cloaca (kloh-AY-kuh), the rectum, bladder and vagina do not form right. They share a single opening to the outside of the body instead of each organ having its own opening. Our 3-surgeon team is one of the only teams in the United States with the expertise and experience to repair this condition.

• Hirschsprung disease

  Healthy bowels squeeze with a wave-like motion to move poop (stool) along. Special nerve cells help the bowels make this motion. Children with Hirschsprung (HIRSH-sproong) disease are missing these nerve cells, so poop does not move forward. Read more.

• Imperforate anus

  Imperforate (im-PURR-for-ate) anus means there is no opening for poop (stools) to leave the body at the end of the digestive tract, where the anus normally is. At the end of the large bowel, the rectum stores poop (stool) until it leaves the body. Problems with the way a baby’s anus or rectum formed are called anorectal (ay-noh-REK-til) malformations. Read more.

• Idiopathic constipation

  Constipation means having hard bowel movements (poop) twice a week or less. This is common, and most of the time it is easy to solve at home. But for some children it happens over and over or lasts a long time, and doctors cannot find the cause. Idiopathic means there is no known cause. Even if doctors do not know the cause of your child’s constipation, we can treat it. Often, medicines or enemas are enough. Sometimes surgery is needed. See Constipation: Frequently Asked Questions (PDF). We have the region's only Bowel Management Treatment Program for children.

• Rectal prolapse

  Rectal prolapse means the lining of the rectum sticks out through the opening of the anus. You may be able to see some red tissue there. Prolapse is a sign that your child has some other pelvic problem, like constipation, infection or an injury. Medicines or other treatments may fix the cause of prolapse. Then the prolapse may get better. If other treatments don’t help, your child may need surgery.

• Neurogenic bowel and neurogenic bladder

  Nerves carry signals between your child’s brain and their bowel (intestine) and bladder. If these nerves do not work right, your child may have trouble holding in poop (stool) or pee (urine) or letting it out when they need to. This problem is called neurogenic (neuro-GEN-ick) bowel and bladder. Causes include brain and spinal cord problems, like spina bifida or spinal cord injury. We treat these problems with medicines, tubes to empty the bladder (catheters) and surgery. Read about neurogenic bowel (PDF). 

• Bladder exstrophy

  In bladder exstrophy, the bladder is not formed right and the pelvic bones are wider than normal. In most cases, the bladder is open and sits outside the body. It cannot store urine. The genitals also look different (epispadias). We use 1-stage surgery to give your child the best results for a better quality of life. Our single-surgery method was developed by Dr. Michael Mitchell, former chief of pediatric urology at Seattle Children’s. The Association of Bladder Exstrophy Communities has named Seattle Children’s a Center of Excellence for treating this condition. Read more.

• Cloacal exstrophy

  In babies with this birth defect, the pelvic bones are wider apart than normal. Many pelvic organs have not formed in the typical way. The baby’s bladder and part of their bowel are outside the wall of their belly and are joined together. The bowel may be shorter than normal and the anus may not be open. The penis in boys and the clitoris and vagina in girls may be divided in 2. Often, babies with cloacal exstrophy (klo-AY-kul EK-struh-fee) have other birth defects, too, such as spina bifida.

  Read how the team at Seattle Children’s helped Amani beat the odds.

  

• Complex urologic abnormalities

  Some children are born with complex abnormalities of their urinary tract. Sometimes the urethra is too narrow (urethral stricture). This can happen when a child is born or because of injury, infection or inflammation. In hypospadias (hi-poe-SPAY-dee-us), the opening of the penis is not at the very tip, but somewhere along the underside. We are very experienced in procedures to repair the urethra (urethral reconstruction). Read about hypospadias (PDF).

• Conditions affecting female reproductive organs

  Abnormalities of the vulva

  Some girls have differences in the sex organs outside their body (vulva). There may be differences only in the way the organs look or also in how they work. In labial hypertrophy, the folds of skin (labia) outside the vagina are larger than what is typical. In imperforate hymen, a thin sheet of tissue blocks the opening of the vagina partly or all the way. Some girls have 1 opening instead of 2 for their urethra and their vagina.

  Vaginal agenesis or vaginal atresia

  Girls may be born with no opening to their vagina, a partly formed vagina (vaginal agenesis), or their vagina may not connect to their uterus (vaginal atresia). Babies with these differences often have problems with their uterus and sometimes with other organs. Some have a condition called Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome. Read more about developmental differences of the vagina (PDF) and about MRKH syndrome (PDF).

  Vaginal septum

  A septum in the vagina is a wall of tissue that divides the vagina in 2. The septum may extend partway or all the way. It may go up and down the vagina (longitudinal septum or double vagina) or across the vagina (transverse septum). Read more (PDF).

  Double uterus (uterine didelphys)

  The uterus begins as 2 tubes. Most of the time, these tubes join and form 1 uterus before a girl is born. In some girls the tubes don’t join. Each tube becomes a uterus. Some girls with double uterus also have a divided vagina. One part of the vagina goes to 1 uterus and the other part goes to the other uterus. Read more (PDF).

  Obstructed müllerian anomalies

  Many of the female reproductive organs start out as small structures called müllerian (myoo-LEER-ee-in) ducts. As a girl develops before birth, these ducts change. They become the fallopian tubes, uterus, cervix and upper end of the vagina. If the ducts do not change in the usual ways, these organs may be blocked (obstructed).

• Surgery

  Our surgeons are experienced in performing the procedures children may need to correct or manage pelvic problems. Before we recommend surgery, we explore other treatment options that might help your child. When surgery is the best choice, team members work with each other and with you to plan the care your child will need before, during and after their procedure.

• Bowel Management Treatment Program

  Our 1-week program relies on methods shown to achieve results. We carefully adapt these methods to find the right balance for your child. For children with ongoing constipation, we teach children and families how to use medicines, enemas and diet to keep their bowels healthy. We also work with children who cannot keep their bowels from emptying. Together we make a plan you can follow at home. Our goal is to prevent soiling accidents so your child can be more active, social and independent. Read more. 

• Stoma care

  If your child needs surgery for a problem with their bowel, the surgeon may make a stoma. This is a small opening in the wall of your child’s belly to let the bowel pass from inside to outside. The stoma lets poop come out into a bag. Our expert nurse will teach you how to take care of your child’s stoma at home. Surgery to make the opening is called an ostomy. Learn about different types of ostomies (PDF).

• Antegrade continence enema (ACE) care and teaching

  An ACE is a type of enema. A surgeon makes an opening in the wall of your child’s belly. Then the surgeon uses a tube (it may be your child’s appendix) to connect the opening to your child’s bowel. You or your child can perform enemas through the tube, instead of through their rectum. If your child will need enemas for months or years, the ACE method may be easier and help your child be more independent. Read more about ACE surgery (PDF). We teach children and families how to use saltwater to flush the bowels and cause a bowel movement. This is called ACE irrigation (PDF).

• Teaching and care for urinary catheters

  A urinary catheter is a tube that drains pee (urine) from your child’s bladder. Your child may need a catheter on a regular basis. The catheter is placed through their normal bladder opening (urethra) or through an opening in their belly (Mitrofanoff channel). This is called clean intermittent catheterization. We will teach you (and your child, if they are old enough) how to use the tube to empty their bladder. Read more (PDF) (Dari) (Russian) (Somali)  (Spanish).

• Urodynamics study (UDS)

  This test helps us learn more about how much your child’s bladder holds, their ability to hold and empty pee (urine) and their bladder pressures. We may do a UDS test if your child is having a hard time with potty training, accidents (leaking) or infections. Sometimes we do this test for other reasons, like before certain bladder surgeries.  Read more (PDF) (Russian) (Spanish).

• Vaginal dilation

  To “dilate” means to make larger or more open. Vaginal dilation is a way to gently make the vagina wider or longer over time. It is done by pressing a smooth plastic tube (dilator) into the vagina for several minutes. Most often, this is done a few times each day. Dilation may be helpful for a teen or woman who wants their vagina to be longer or wider. Read more (PDF).

• Biofeedback

  Biofeedback is a way to train your child to better sense and control what happens in their body. It may help children who have trouble sensing when they need to release pee or poop (stool). Read more.

• Mental health support

  Having pelvic problems may affect your child’s view of themselves or their body. Children with these problems may feel they are different from other children. They may have some different needs than other children their age. They might feel lonely or depressed at times. Our team can help your child cope with feelings and concerns like these.

• Nutrition and feeding

  Babies, children and teens with pelvic conditions sometimes have challenges with eating, digesting food and growing at a healthy rate.

  Working with the rest of your child’s team, our nutrition experts:

  • Check whether your child’s diet meets their nutritional needs so they gain weight and thrive
  • Make sure children are ready for surgery by eating a healthy diet and taking supplements as needed
  • Suggest changes to diets to help prevent constipation
  • Assess your child’s feeding skills, behaviors and swallowing safety, if needed

  Team members may include nurses, dietitians, occupational therapists, physical therapists and speech therapists.