Shriners Children's provides care expertise for children with caudal regression syndrome.
The goal of our colorectal and gastrointestinal specialty care is to provide children with anal-rectal disorders advanced care and rehabilitation that frees them from social stigma and allows them to live and play like other children.
What is Caudal Regression Syndrome?
Caudal regression syndrome is a disorder that impairs the development of the lower (caudal) half of the body and sometimes affects the gastrointestinal tract. Children with caudal regression syndrome may have abnormal twisting of the large intestine, an obstruction of the anal opening (imperforate anus), soft pouches in the lower abdomen that have popped out (inguinal hernias) or other malformations of the gastrointestinal tract.
Children affected are often constipated and may experience loss of control of bladder and bowel function.
What Are the Symptoms of Caudal Regression Syndrome in a Child?
- Lack of feeling in legs
- Urinary incontinence
- Fecal incontinence
How We Care for Caudal Regression Syndrome
Shriners Children's team of pediatric surgeons who specialize in colorectal and gastrointestinal issues can provide surgery to treat certain symptoms of caudal regression including abnormal twisting of the large intestine, an obstruction of the anal opening (imperforate anus) and soft out-pouchings in the lower abdomen (inguinal hernias).
If your child has trouble controlling their bladder, they may need a catheter to drain their urine. If your child has an imperforate anus, they may need surgery to open a hole in their intestine and pass stools outside of their body into a bag. Surgery performed to treat various symptoms usually resolves them completely.
If bowel and bladder function don’t fully recover, a child will be given a bowel management plan and followed closely by our clinical teams, including social workers, medical managers, physicians and others. Emotional or social counseling can help a child adjust to life.
We provide follow-up care to monitor your child’s health, prevent problems, manage symptoms and give your child the best quality of life.
Specific treatments and services may vary by location. Please contact a specific location for more information.
Understanding Your Child's Colorectal and Gastrointestinal (GI) Appointment(s)
On the first visit, parents and children typically come for a group overview and educational presentation about bowel management. Our doctors and nurses explain the medicines, enemas and diets we use as treatment options. Each family has a one-on-one clinic visit with a provider from the program to make a plan for their child.
If referred to one of our locations for a more complex condition or surgery, you and your child go directly to the one-on-one visit with one of our providers to build an individualized plan of care.
Sometimes, when deemed appropriate, your child may have a bowel X-ray. This helps us with diagnoses and check whether your child’s plan is working. A nurse will discuss your child’s results.
Our goal is for your child to empty their bowel daily with no accidents and to live with as few limitations as possible. Success depends on your child’s condition and following your plan closely.
How We Support Your Child’s Total Health and Well-Being
Families and patients say that Shriners Children’s feels like home to them, and it's no wonder to us. We know that a child's needs go beyond the physical. Our care teams support their social, emotional and developmental health with patient programs and activities.
A few examples include:
Dr. Saadai is amazing. He’s a friend. And this may sound strange, but Shriners is like a second home to me.