Here’s the latest scoop on Carson’s surgeries for the future. These are obviously all rough dates and some of them may not have an explanation as why they have to happen then. (I really didn’t think to ask). This was all from my phone call with Dr. Fearon in Dallas.
Carson’s will have three surgeries in Dallas, one when he is 9 months, one at 12 months, and then one more at 15 months. The first two surgeries (9 mo. and 12 mo.) will be to separate his fingers and toes. The reason that it takes two surgeries is because to separate the fingers and toes, they cannot cut all the way through the tissue connecting them; otherwise it would destroy the blood supply that has grown between them. After each surgery, he will have arm and leg casts that will need to be on for 2-3 weeks.
The last one (15 mo.) will be to separate the sutures on his skull (cranial vault surgery). Dr. Fearon said that he will wait as long as safely possible to do the skull surgery. This is because it will reduce the number of skull procedures required and reduces the need for a blood transfusion. He said that over Carson’s lifetime, he will need 3-4 skull surgeries to help with the intracranial pressure. He will have to stay in Dallas for a few days following this surgery.
During one of these three surgeries (I forgot which one) he will also have his cleft palette repaired and get tubes put into his ears (both of these are very common issues for Apert). Dr. Fearon said he does this to reduce the number of surgeries that children with Apert require. Fewer surgeries are good.
Sometime in the range of 5-7 years of age, Carson will need another cranial vault surgery. Then at 8-9, they will do the mid-face advancement to pull his cheekbones forward. He will also likely need an eye surgery to add an eye muscle that is missing (this is also common with Apert). Dr. Fearon said that he would not perform surgery on Carson’s narrowed nasal passage, but let it open up on its own as he grows. I do wish that these were the only surgeries that he will need. There could be a few more that come up as time goes on.
I was very pleased with my phone call with Dr. Fearon. He was patient to answer my questions and really showed me that he knows how to help Apert kids. Over his career, he’s handled 120 cases of Apert children. Considering that most clinics see far less in a lifetime, we’re very happy to be working with him.
Well I’m sure this generates a lot of questions (it does for me). If you want to talk, you can email us or call us. If you want, you can read the postings on the Dallas Craniofacial Center’s website that specifically deal with Apert. This has a lot more info on what I was talking about above. Click Here or copy and paste this in to you address bar. http://www.thecraniofacialcenter.org/apert.html