Hi Marisa,

I live in the Detroit area in Michigan. Daniel’s surgery was performed by Dr Roselle at Children’s Hospital in Detroit. She is the head of the Crainial Facial

Surgical Department at Children’s Hospital.

We also received the same mixed messages that you are receiving regarding brain development. We were concerned about both the cosmetic aspect and the neurological aspect of the condition. Certainly, opening up the suture will provide for a more “normal” appearance.

It was explained to me that because the remaining sutures in Daniels head were not fused, the brain would continue to grow normally, however,

it would push the bones out in the rear of his head instead of evenly all around. Having said all that:

Daniel is mentally impaired. The frontal lobes of his brain are smaller then they should be. The Neurologist said that it may have been due to the trigonocephaly but may not have been. When they did the procedure, they enlarged the volume of his skull because the opened up the suture and formed the bones in the front of the skull to be Convex rather than concave. They expected that the brain would have filled in the space created by the procedure. In most cases, the brain will flow forward and fill in the space. Because Daniel’s frontal lobes were not as big as they should have been, the brain did not fill in the gap and there was some bone settling as the newly formed bone found the supportive brain tissue to rest against. The result is that Daniel still has cosmetic indentations on either sides of his forehead that we may be addressing with an additional procedure when he is 5. I have seen the results of other children that have had the procedure and did not experience the problems we did. They look awesome.

One of the problems with Jacobsens kids is that they have a bleeding disorder because the blood platelets are either to few or enlarged and not functioning. Daniel had this. I do not know if Noah has this, but if he does, you have to make the hospital aware that there is a potential for severe bleeding. In Daniel’s case, they were aware that his platelet counts were low and they waited for his counts to get over 100,000 before doing surgery. They had platelet transfusions standing by and they did the surgery. The problem is that a certain amount of the 100,000 platelets did not work, so in actuality, the number of platelets that were able to be used for clotting was well below 100,000. As a result, Daniel started to bleed while in surgery. They transfused him with 2 units of platelets and then they put in some man made blood products. The bleeding persisted so what was planned as a 4.5 hour procedure turned into a 2.5 hour procedure. The result is that much of the fine tuning of the new bone structure to make his head perfect was not done and that may be part of why we are looking to repeat the process when he is 5.

I am telling you this not to scare you, but to help you so that you take the necessary steps to make sure that the hospital not only looks at platelet counts but also platelet function before undergoing the procedure.  

If you want to talk about this on the phone, let me know and I will set up a time with my wife to conference with you.

Thanks,