I have not even had the chance to announce Brady's birth on our blog yet, but not only is he here, but practically perfect in every way. A jewel of a child, and such a joy to our lives. We couldn't be happier. He now faces an extensive surgery on his little head, so we request your prayers for our little boy.
Here is the long version of his recent diagnosis.
The result of Brady’s appointment at ACH on 1/6/11 with Dr. Honnebeir is as follows (quotes are her descriptions to us).
Brady does have Craniosynostosis with a Sagittal suture closure. The sagittal suture runs from the top of the head to the middle of the back of the head. This condition creates a classic “boat-shaped” head.
This is essentially a “birth defect”, yet his condition is “mild” which means only that is has been caught early in the process, and his head is not already mis-shaped.
This is “not a self-correcting” condition, and does require surgery. If not treated, his brain function would not be affected, but his skull would deform as growth occurs. In his case, with the sagittal suture closure, his forehead would enlarge to allow his brain to grow, but there would be no expansion from side to side. (i.e. the narrow “boat” shape). His soft-spot has already enlarged to allow for brain expansion.
Our next step is a CT scan probably on the 11th, to be read by a neurologist, Dr. O’Brien on the 13th, mainly to get the best picture of his condition prior to surgery.
The surgery needs to be done around 4 months of age, which is February 18th for Brady. There is no date scheduled yet, as Dr. Honnebeir and a 2nd neurologist will perform it. There will be about a 4-inch horizontal incision across the top of his skull in a zig-zag formation. The zig-zag is so that his hair will part more naturally afterward. Dr. Honnebeir will open the closure and scrape the sides of the skull all around for more symmetrical re-shaping.
The greatest risks include bleeding. He will need a blood transfusion during the surgery. Family members may donate blood, but no more than 24 hours before the procedure.
Technically, risks also include damage to the brain, but Dr. Honnebeir has never seen that occur. Ever.
The surgery we elected is about a 4-hour operation and will be more “middle of the road” regarding the intensity of the surgery. This option is invasive, but controls the risk of blood loss and requires only a 2-3 day recovery in the hospital.
Laparoscopic options lessen the surgeon’s control of the cuts and could cause a prick of the sinus drain of the brain. The more invasive procedures include removing pieces of the skull, reconstructing, and replacing them, requiring significant blood loss and longer recovery.
Brady will have an orthotic reconstructive helmet to wear for 2-3 months 24/7, to mold and shape the skull to the appropriate shape. This is a laser-measured model, custom fit, and designed for Brady. It can be scraped inside to expand and allow for growth as it occurs in those 2-3 months. The new shape of his skull will fuse normally. He will have routine check-ups for years to follow.
- This is not hereditary that they know.
- He will still be able to participate in contact sports later in life if he so chooses.
- Our referral to Dr. Boop at Semms-Murphy clinic in Memphis is encouraged as a second opinion in Memphis if we so choose, but close proximity to home is to be highly considered due to Brady’s recovery and the multiple trips to the hospital in the coming years.
- Dr. Honnebeir (pronounced Oni-Beer) is new to ACH (about 6 months). She is polish and trained at Cornell and Penn. She has performed hundreds of these surgeries during her fellowship, practice, and missions. She was hired at ACH to build a better craniofacial surgery department within neuroscience, as ACH is lacking surgeons. We feel confident in her ability and knowledge, and have been extremely supported by her staff.
- We are thankful and so generously blessed by all the work done in expediting this process, the prayers, fasting, and words of encouragement on our behalf by all of our friends and family, and know that the Great Physician will be healing our boy! We love you all.