In amniotic band syndrome, strands of the amniotic sac ensnare parts of the developing body, causing a variety of problems. These may include syndactyly, bands or constriction rings, amputations, swelling, or other deformities. There are several different names for this condition.
Does amniotic band syndrome cause my baby any pain?
No, typically there is no pain associated with this condition. However, occasionally, if there is a very tight band associated with some skin breakdown or infection, there may be minor discomfort.
What are the different types of amniotic band syndrome?
Amniotic band syndrome may present in many different forms. For example, it may cause only a minor groove or indentation in one of the limbs; or it may cause syndactyly of multiple digits on the hand or foot with multiple bands or constriction rings on multiple digits; or amputations of digits or larger parts of the limbs. Each case is unique.
Who gets amniotic band syndrome?
Amniotic band syndrome can occur in any newborn infant. There is no pattern of inheritance. This condition occurs in approximately one in 15,000 newborns.
What causes amniotic band syndrome?
Although there are many theories, the cause of amniotic band syndrome has not been determined.
What are the main issues related to amniotic band syndrome?
The primary issue in most types of amniotic band syndrome is function of the hand and digits; appearance of the hand is also an issue, but is secondary to function. When there is syndactyly of the digits (fingers or toes joined together), independent function of the digits is limited. When the digits are short because of growth arrest or intra-uterine amputations, function may also be limited.
Are there other problems that occur commonly with amniotic band syndrome?
The most common problems that are associated with amniotic band syndrome are cleft lip/palate and clubfoot. Associated anomalies may occur in approximately 40-60% of cases. Usually, no there are no abnormalities of the internal organs.
What is the treatment for babies with amniotic band syndrome?
While every patient is treated individually, with treatment plans made specifically for him or her, some generalizations are possible. Amniotic band syndrome is treated surgically. The exact type, number, timing, and sequence of operations depends upon the specific deformity present in each case. When the fingertips are joined together (acrosyndactyly), the first operation usually is done to release the fingertips so that the fingers may move more independently. This procedure is done in the first three to six months of life. After that, procedures may be done to deepen the web spaces between digits to increase their effective length; these operations may involve the use of skin grafts from the abdomen. Constriction bands are “contoured” by excising them and rearranging the skin and soft tissues on either side of the band to create a smooth, cylindrical shape to the digit or limb. Occasionally, even more complicated procedures may be done to lengthen digits, such as using distraction osteogenesis to stretch the bones or using microsurgery to transfer toes to the hand.
What is done between the time my baby is born and the first surgery?
You will meet with your surgeon soon after your baby is born. In some cases, the diagnosis is made prenatally by ultrasound exam, and you may have the opportunity to meet your surgeon before your baby is born. Your surgeon will examine your baby and take xrays of the affected hand. Your baby will be examined in the clinic periodically during the months before surgery. The treatment plan and the details of the surgical procedures will be carefully explained to you by your surgeon. Usually, no special treatment or therapy is required before surgery.
What sorts of specialists will be involved in my baby’s care?
At the very least, your child will be treated by the hand surgeon and a certified hand therapist. If your baby has club foot, a pediatric orthopaedic surgeon will be involved, and a craniofacial surgeon (who may also be a pediatric hand surgeon) will treat cleft lip and palate if present. In addition, a developmental pediatrician is sometimes involved in the care of babies with amniotic band syndrome.
Will we get to know our surgeon?
Ideally, you will meet your surgeon either prenatally or soon after your baby is born. You will meet with your surgeon several times before surgery, and will get to know him quite well. Many children with amniotic band syndrome require multiple surgeries, and the family and surgeon often work together for quite some time.