A study of individuals with SA/CRS was conducted in 2013 by iSACRA,  which at the time had over 475 contacts of individuals with sacral agenesis/caudal regression syndrome and their families. The study included self-reported or parent-reported height and weight information of 82 individuals.

Participants

34 males

48 females

The data was divided into three categories:

• 12 individuals with spine ending in thoracic region
• 33 reporting with spine ending in lumbar region
• 37 reporting with spine ending in sacral region

The following additional information was collected because of the ways in which this information may impact weight and height measurements:

24.39% (20 reporting) crossed /bent or webbed/fused position of legs

9.76% (8 reporting) legs fused in straight position

18% (15 reporting) one leg different size than other leg

69.44 % (57 reporting) legs very tiny or small as compared to body

12% (10 reporting) legs average size as compared to body

8.54% (7 reporting) legs disarticulated at knee (ages 2 to 5)

50% (41 reporting) club feet corrected through casting, taping or surgery

13.41% (11 reporting) use of feeding tube

26.83 % (22 reporting) premature birth

78 responses given for birth weight with a range between 2 lbs, 6 oz and 10 lbs, 1 oz.

Weight charts were developed for each of the data categories, with summary information provided below. This information is not intended to replace sound medical advice, but may serve to augment information in an area that is very rarely researched. iSACRA is not aware of any other collection of data for weight and growth in this population, where in many cases use of standard weight and height indicators are not applicable.

Category #1 THORACIC LEVEL SA/CRS DATA:

Summary:

12 infants with thoracic level SA/CRS were reported as having a weight range between 3lbs, 6 oz and 5 lbs, 15 oz,

In all cases, infants had tiny/small legs in proportion to the body and the legs were bent/fused/webbed in a crossed position.

Height, although reported as difficult to measure due to leg position, ranged between 12 and 15 inches at birth. Height at adulthood ranged from 20 inches sitting height to an estimation of 38 inches (indication of measurement while sitting or full length not given)

3 of the 12 reported had leg disarticulation at-knee surgery at the age between 2 and 4 years, impacting overall weight information because of the removal of the lower part of the legs.

1 of the 12 reported use of feeding tube (heart surgery, at 3 months weight was 3 lbs, and had dropped from original birth weight of 6 lbs)

While not reported within the age range gathered for this data, obesity is a known and frequent concern of the adult population for individuals with either thoracic and lumber region sacral agenesis.

APPROXIMATION OF GROWTH CHART, THORACIC LEVEL, m/f combined

Weight reported in lbs

Category #2 LUMBAR LEVEL SA/CRS WEIGHT DATA:

33 birth weights were reported for infants with lumbar level SA/CRS with a range from 4 lbs, 2 oz to 8 lbs, 12 oz. The average birth weight from this data is 6 lbs, 5 oz.

Weight ranges vary significantly within this category, largely depending on the way SA/CRS affects the legs. Some children with lumbar level SA/CRS have leg size that is average in proportion to the body while others have legs significantly smaller. Some have leg disarticulations (4 reported). Weight at age 16 years varied from 55 lbs to 106 lbs.

LUMBAR LEVEL GROWTH CHART APPROXIMATION:

Weight reported in pounds

Category #3 SACRAL LEVEL SA/CRS WEIGHT DATA:

Average birth weight reported as 5lbs, 14oz with a large range from 2 lbs, 6 oz to 10 lbs, 1 oz.

Physical characteristics reported in this category also varied widely with some reporting bent, crossed legs small in proportion to the body while others reported no outward physical characteristics.

Weights vary considerably as well, with a range at age 9 from 47 to 78 pounds. Weight information at older ages is sparse, with few individuals reporting weight beyond age 9. Individual reports show weight at age 12 at 65 lbs, at age 20 at 71 lbs. Due to insufficient data beyond age 9, the growth chart was created only for weight up to age 10.

APPROXIMATION OF GROWTH CHART FOR SACRAL LEVEL

Weight reported in pounds