Callie Surgery

As many of you know Callie’s Nasal passage were closed at birth and had to have surgery to reopen them. In February we had them scoped while having her tonsils out as we felt they were closed again and they were.

We were referred to Milwaukee to see a facial cranial surgeon to re-fix the choanal atresia (nasal obstruction). Much to our shock he told us Callie’s first issue is actually that her brain is too large for her skull and that she needed to have this fixed first. The reasoning behind this was she had excessive ‘thumb printing’ in her skull (basically the skull was no longer smooth and it was taking on the shape of her brain). He suggested moving the forehead and mid face out ½ inch. She would be sent home with pins that we would turn for 3 weeks. Once this was complete Callie could have the nose repaired.

Once we returned to Wausau this was discussed with our team of specialists and they thought this seemed very extensive and somewhat unnecessary. The local team thought the ‘thumb printing’ was from her hydrocephalus (extra fluid in her brain – repaired with a shunt when she was 6 mo) at birth and wanted a second opinion. We were refereed to Gillette Children’s in MN. While the referral was taking place we received all of the paperwork from Milwaukee and much to our surprise the radiology report mentioned a malformation of her neck – this was the first time we heard this. Milwaukee never once mentioned this to us while we were there.

We recently went to MN and met with the facial cranial doctor there. The clinic was absolutely amazing – extremely organized, detailed and willing to work with us. The doctor explained to us that the ‘thumb printing’ has increased since her the hydrocephalus was present in 2009. Since this was repaired he would not expect this to get worse. Also, he said the that her sutures in her brain are 100% fused. This should not be the case for a 3 year old. He even pointed out that should also not be the case at 30 years old. He said Callie absolutely needs surgery to fix this. She was officially diagnosed as having craniosynotosis. Also he was very concerned with her neck and brought in the neurosurgeon that day to see us. They ran a quick MRI while Callie was awake and Chris held her. They did learn that her spinal cord is compressed at the skull and C1 just as Zak’s was. The big difference is he does not feel that Callie’s neck is unstable and will need to be fused as Zak’s was. He believes that by just removing a piece of bone this will resolve the issue. All in all, the final determination was made this needs to be the first surgery to take place. While she is getting the neck fixed they will also extend the back of her skull to allow the brain to have the room needed. They will not be putting in any pins for us to turn (which was a relief to hear). Once that is complete we will wait 6-8 weeks to have a second surgery to extend the forehead and a third to extend the mid-face. We also saw an ENT while we were there in regards to the original issue, Choanal atresia and she was not the right person, however referred us to her partner whom she felt would be the right person. We need to make a follow up appointment with him while we are in MN.

Callie is scheduled for her first surgery on Monday October 29th. As for now she will spend 1 night in the ICU and 3-4 nights on the floor. Please say lots of prayers for Callie and family while she is going through this. We know she is in great hands at Gillette and they will take great care of her. We are very grateful to have such a wonderful group of support around our family.