Caudal Regression Syndrome and Social Security Disability

Caudal Regression Syndrome - Condition and Symptoms

Caudal Regression Syndrome is a rare birth defect caused when the caudal (or lower) end of the spinal cord fails to mature sometime prior to four weeks into the pregnancy. It is also known as caudal dysplasia sequence and sacral agenesis. The cause is unknown, but there may be a link between this birth defect and diabetes in the mother. There are four levels of severity for infants with this birth defect, with the least severe resulting in partial formation of the sacrum (the triangle shaped bone at the base of the spine that forms the back wall of the pelvis) and the most severe resulting in total absence of the sacrum.

While mild cases of Caudal Regression Syndrome show few symptoms, severe cases can cause impairment of the nerves, muscles, skeleton, genitals, urinary tract, intestines, heart, and respiratory system. The number and type of symptoms therefore vary, depending on the severity of the defect.

Caudal Regression Syndrome can result in everything from limitations in movement to incontinence to complete loss of nerve function. Depending on the type of defect, the infant may need a permanent colostomy and/or some type of continence control system such as self-catheterization. Occasionally if deformities of the knees, legs or feet cannot be corrected, amputation at the knee may be considered.

Often infants with severe Caudal Regression Syndrome die soon after birth; surviving infants usually require surgery to repair defects to the extent possible.

Diagnosis of this birth defect can be made using a prenatal ultrasound test at about 22 weeks into a pregnancy. The ultrasound can show the interruption of spinal development and sometimes the legs of the fetus are in a "frog-like" position.

Persons born with Caudal Regression Syndrome usually have some or all of the following symptoms, in varying degrees of severity: 1) partial absence of lower end of spine, 2) abnormalities of the lower end of the spine, 3) impairment of neurological functioning, 4) incontinence, 5) no control over bowel movements, and 6) abnormalities of the pelvis.

Filing for Social Security Disability with a Diagnosis of Caudal Regression Syndrome

Although Caudal Regression Syndrome bears no resemblance to mosaic Down syndrome, it is discussed in the same sections of the Social Security Administration’s Blue Book, since both conditions are congenital. Most of Section 10.00 Multiple Body Systems – Adult and in Section 110.00 Multiple Body – Childhood are devoted to mosaic Down syndrome, with Caudal Regression Syndrome being mentioned in one final paragraph which discusses “other” congenital conditions that result in developmental impairments. Therefore when you decide to apply for disability benefits based on a diagnosis of Caudal Regression Syndrome, the best course of action is to focus on the limitations this condition imposes on your ability to function from day to day, with an emphasis on why these limitations prevent you from obtaining and keeping gainful employment.

The Social Security Administration (SSA) bases its rulings for disability benefits not on a person’s condition and not on the severity of the condition. SSA is concerned only with the way you are able to function despite your disability and despite treatment you may be undergoing. If your disability is severe enough to prevent you from working, you may be eligible for disability benefits.

When you file for disability benefits, you must present adequate medical records that 1) include a medical diagnosis of your condition and 2) document the severity of your symptoms and show how these symptoms prevent you from working. It is always a good idea to engage a professional who is familiar with the process of applying for Social Security disability benefits to assist you in assembling the type and sort of medical records usually required by SSA.