February 24, 2016 "Ortho surgeon consult"

Rayden pulled up to stand for the first time on Feb. 10 (13 1/2 mo. old). We just couldn't believe it! It was very difficult to capture a picture because he would only stand for about 30 seconds. Even though his feet are turned upside down, inward or backward, we don't care. HE IS STANDING!! Look carefully in the video clip below and you will see that he is standing on the outsides of his ankles as they turn inward. 

Dr. Narotam said it was time for us to consult with Dr. Anna Cuomo about surgery to fix Rayden's foot positioning. Although Rayden has already gone through 14 sets of leg casts and had his Achilles tendons clipped, Dr. Narotam believes the Achilles tendon is so tight that it is pulling his ankles up as well as other tendons inside and around his ankles that are pulling his feet back inward.

Dr. Anna Cuomo, pediatric orthopaedic surgeon, stated that Rayden had descent quadriceps muscles so she believes he will be a walker. Therefore it is important for his feet to be flat. They normally do serial casting in very young children to remodel the deformed bones of clubbed feet. Serial casting HAS improved Rayden's bones but has NOT fully corrected the deformity because the tendons and ligaments are too tight to allow the feet to remain in the correct position. She stated that if we leave the feet in this position for a long time the bones will permanently keep the deformed shape that holds them in the clubbed foot position. As children grow they loose the ability to remodel the bones through casting so then they will have to actually cut the bones to reshape the feet. Leaving his feet in this position will commit him to having bone surgeries later in life and possible amputation! Therefore the goal is to get his feet in position so the bones will actually grow correctly and prevent bone issues in the future.

She is proposing a bilateral posterior clubfoot release surgery. She will make a curved incision in the back of his ankles so that as he grows the scar will almost straighten itself out. Then she will have to divide the Achilles tendon in order to reach the other tendons in and around his ankles. She will release ligaments and capsules around the joints and between the bones. This will allow the bones to move into the position they are suppose to go in hopes to ultimately change the final shape of his bones. The longer we wait the harder it is to change the shape of the bones. On her way back out of the ankle she wants to resect (cut out) a portion of his Achilles tendon, enough that it will hopefully NOT grow back together. She stated that this tendon is the biggest offender. It's not working for him and it's not stretching out. It is just acting as a chronic tether pulling the foot down into the pointed toe position.

That's where Michael and I are really concerned. We are hesitant to allow a surgery that will REMOVE a portion of his body. What if he CAN feel his feet in time? Will this surgery remove all chances of that? Will it make his feet just flop? Will he ever be able to walk barefoot or will he always have to have braces on his feet to even walk around inside the house?

I asked Dr. Cuomo if there were any other options. She stated that she could lengthen the tendon, instead of resecting it, on her way back out if that's what we want. This has a higher risk of recurrence because as he grows the tendon will just tighten back up requiring more surgery. She said she wouldn't recommend it, but she would EXTRA lengthen it IF that's what we are more comfortable with. Either way, she stated that we MUST do something within the next six months because he cannot continue to stand/walk on his ankles. This will cause major skin and bone issues in the future and may lead to amputation.

The Achillles tendon is the largest and strongest tendon in the human body.  It connects the heel bone to the muscles at the back of the calf. The Achilles tendon allows the muscles of the leg to bend and stabilize the ankle joint. It maintains balance while walking, running and jumping and works with the nervous system so individuals know where their feet and body are in space.

 If the Achilles tendon is that important do we really need to remove it? Michael and I are struggling with this decision so we have decided to seek a second opinion before doing anything this drastic. We will be going to Duke and Shriner's Hospital for Children in South Carolina in late March.