For those of you who follow our twitter or facebook feeds, you know by now that our 4 month old daughter Bethany will soon be having surgery to correct some issues with her skull. In order to help answer the many questions that are certainly out there, please read the information below. Thank you all for your prayers, and please understand that if we asked you to read this, it is simply so we don’t have to retell all these details multiple times. We appreciate your understanding and will be sure to keep everyone updated as things progress!
First, and most importantly, Bethany is FINE. She is not in any pain and this is not an emergency or trauma issue at all. We knew from the first week that there seemed to be a slight deformity with her head just above her eyes, however all advice from our physicians was to simply wait for a couple of months and see if it self-corrected. Well, it has been a couple of months and it has not.
On June 15th, during our routine 4-month vaccination appointment in Sulphur Springs, TX, the pediatrician expressed a concern that she would like to rule out that the slope over Bethany’s left eye was not a bump being caused by a tumor. In order to rule that out, we agreed to do a CAT scan at the local hospital.
The result of the CT scan was that there was NO tumor. What they did determine is that the cause of the deformity is a premature fusion of the suture (space between the bone plates) on the right side of her head, from above her ear to the soft spot on top. (see image above)
The technical term is “Craniosynostosis“, specifically “Coronal craniosyostosis” meaning that the affected suture is between the frontal and parietal bones. This does not allow the individual plates to shift as the brain grows, and eventually creates pressure and greater deformity if left untreated, causing additional complications.
The treatment is a surgical cosmetic procedure where, basically, the will open the skin covering the skull from ear to ear over the top exposing the bone. They will then separate the fused plates, removing any bone material that would possibly cause problems later, and possibly use small dissolving sutures to reposition different pieces of the skull. Then they close it up and protect the head as it heals with a helmet, which also assists in therapeutically reshaping the head. The surgery can take from 4-6 hours, and the resulting hospital stay can be up to a week or more depending on how involved the surgery becomes. Expected recovery times will vary as well based on the amount of fused bone, however it likely ranges from 4-9 months.
A few things to note:
This is NOT considered brain surgery, so we are thankful for that.
We are currently waiting to hear from Scottish Rite Children’s Hospital in Dallas, TX to see if they will take our case. They are well versed in the procedure, but typically only deal with TX residents. Please continue to pray that they will make an exception.
OVERALL… everyone is doing well. We appreciate your continued support and prayers. We will be taking some time off the road as we go through this process, but will continue to update our blog and continue our work here in the Dallas/Sulphur Springs area.
Chad & Amy