Apert Sydrome: Treatment

Treating the Hands and Feet:

Parents are often anxious to have the fingers of their child with Apert syndrome separated. The timing for this separation depends a little on how the child's brain is doing and what needs to be done to the skull (that is, skull surgery takes precedent over the hands and feet). I prefer to have all the fingers separated by 18 months of age. This is to allow the child to "learn" how to use their new separated fingers as soon as possible. I prefer to separate all the fingers in two operations. I believe that no fingers should ever be "thrown out," nevertheless; this remains a standard recommendation by many surgeons today. It is almost always possible to get 10 fingers, and I believe that that having a five-fingered hand becomes increasingly more important to children as they grow older (see publications [ #21]).

How about the toes? Separating the toes in a child with Apert syndrome has generated a lot of discussion among families with children born with Apert syndrome. To begin with, separating the toes does not improve a child's ability to walk or run. In fact, it could be argued that the only truly functional benefit to separating the toes is that it would allow a child to wear "flip flops." I believe that it is very important to separate the toes, if it doesn't add any additional operations. At our center, we separate all 10 fingers and 10 toes in just two operations. As any child needs two operations to separate all the fingers already, no additional operations are being performed if the toes are done at the same time. The reason I believe that it is important to separate the toes, is because as children with Apert syndrome grow up, it is the appearance of the hands and the feet that bother them the most. In fact, many children who have not had their toes separated will not want to go swimming, go to the beach, or take their shoes off to run in the grass, because of the embarrassment they feel. Therefore, separating the toes does offer a very significant "functional" improvement, because it helps the child to live a more normal life. It is a common misconception that separating the toes widens the foot. In fact, the skin bridges between the toes in no way helps to keep the toes closer together. The width of the toes is determined by the way the bones of the toes grow: the Apert foot grows wide because of the angulations of the bones of the toes. The skin between the toes simply stretches out with toe growth.

As stated above, all 10 fingers and toes can be safely separated in just two operations, although this does take a highly experienced team to perform this combined procedure. Usually, children just spend one night in the hospital, and then go home the next day. We send the children home in casts, which are removed about three weeks later (usually at home). After three or four months, the second stage is done to complete the release of all the fingers and toes.

After all the fingers and toes have been released, I have been performing another series of operations on the hands and feet, usually when the child is older than 10-years of age. At this time, bends are put in the middle of all the fingers, and the thumbs are straightened. This allows the hand to both function and look better. These procedures are especially useful to help the child learn to button shirts, pull up zippers and tie shoes. In addition, sometimes some of the "bumps" on the foot are reduced if they are causing soreness, and the big toes can be straightened as well.

Examples of released hands (Type I)

Example of released hands (Type III)

Example of a patient with un-released toes, and one in whom the toes have been separated.