Facts About Amniotic Band Syndrome / Missing Limbs
When a baby is developing inside the uterus, he or she is in fluid filled sac called the "amniotic sac." This sac is made up of strong fibers that are usually hard to break. Occasionally, this sac will tear open, and the sticky strands of the amniotic sac can wrap around the developing baby's limbs, head or torso. When this happens, amniotic banding may occur.
Each child with ABS is different. The most common effect of amniotic banding is seen when the fibers wrap around the arms, legs, fingers or toes. The fibers cause deep grooves which may look like the baby had a tight rubber band on that place. If the amniotic banding is severe, it may cause the complete amputation of finger(s), toe(s) or a portion of the limb. A cleft lip may occur when it is wrapped around the face (less common). Clubfeet, fused fingers and toes, and hemangiomasis are also common effects of amniotic banding. ABS is associated with an estimated 31.5% of club feet.
Amniotic Band Syndrome / Missing Limbs Challenges
ABS does not typically present any significant complications.
Amniotic Band Syndrome / Missing Limbs Treatment
Treatment depends on which body part the band was wrapped around and the severity of the abnormality it caused.
- Prosthetics: Prosthetics allow a child to retain some function of the areas of their bodies affected by ABS. How and when these are needed are individual to the child.
- Splints/Casts: Splints and casts may be used in lieu of surgery to correct club feet. See the description for Club feet for more information on treatment.
- Physical Therapy: PT will help the child learn to adapt to the use of their prosthetic and improve their gross motor skills. PT will also help children with corrected club feet.
- Occupational Therapy: OT can help a child learn to adapt to their limitations in order to care for themselves, as well as improving fine motor skills like pinching, writing, and holding utensils to eat.
- Surgery: In certain cases, surgery can help increase mobility in the child’s joints. There are several different types of surgery that could be used:
- Distraction Augmentation Manoplasty – The technique pioneered by Dr. Norman Cowen “grows” up to one inch of bone per month to create palms and lengthen fingers. A contraption of steel rods, pins, and screws is inserted through the existing bone. Screws are turned at an even rate several times a day to achieve growth of up to one millimeter a day. Turning the screws takes up slack and the body responds to this stress by growing bone.
- Realignment Surgery - Surgery to move affected bones into a better position.
- If an amniotic band is constricting, doctors may perform a surgery to release the band. The exact method used will depend on details of your baby’s bands, like the number of bands, where they are and how deep and close they are.
Amniotic Band Syndrome / Missing Limbs Prognosis
Most children with this special need have a normal life span and can lead independent lives. However, some children with more serious cases need lifelong help with daily activities. There is excellent long-term outcome for babies with only their limbs affected, even in the case of amputation.