Julia's Frontal Orbital Advancement Surgery

I promised I'd give more details on Julia's next surgery, so here they are.

At the end of November she will undergo what is called a frontal orbital advancement (FOA). They cut the front section of the skull, move it forward, and also move the bone of the upper orbit (top section of your eye sockets, for those non-sciencey folk) forward. They take the section of bone from the front of the skull and actually split it into two pieces. They split it by thickness, so they essentially double the surface area of the part of the skull that is being moved. The two pieces will be half the thickness of the original piece, but there is then more bone to work with and to fill in the gap created by moving the skull and upper orbit forward. 

The neurosurgeon has assured me that there will be no loss in the integrity of her skull with this splitting of the bone. Apparently, her body will build it up in thickness again and also form new bone in between the pieces they place to fill the gap.

All emotions aside...isn't the human body amazing?!

Image found on yoursurgery.com

So, this is being done for a few reasons.

The most major and important reason is that Julia requires more room for her brain to grow. A typical infant skull is comprised of five floating plates of bone. These bones are held together by fibrous material we call sutures. As the infant's brain and surrounding structures grow, the sutures allow for the bones to move and expand. If any of the bones fuse prematurely (as is the case with Julia and all Apert syndrome babies) it causes the skull to grow in an atypical shape since expansion doesn't happen along all the usual suture lines. This early fusion can also cause increased pressure on the brain as it grows larger and runs out of space within the skull. There are other variables to increased intracranial pressure, but I'll leave it at that for now.   

Image taken from stanfordchildrens.org

Image taken from cincinnatichildrens.org

You may be wondering.....her forehead already looks disproportionately large in comparison to her face and this surgery will only accentuate it further, right? Yes, that is true, and I had the same initial reaction. But, her appearance is not only caused by her forehead - it's actually due to another difference in her development caused by Apert syndrome. Children with Apert syndrome tend to have an underdeveloped mid-face (eyes, nose, nasal passages, cheek bones). The midface is more recessed - sits further back - than a non-Apert child and therefore accentuates the forehead. Our eyes are drawn to her forehead without realizing that it's the disparity between the forehead and midface that we're seeing.  Yes, her head circumference is above the 100th percentile but not by as much as one would first imagine. Dr. Steinbok measured her head recently and stated that her measurement is only one centimeter greater than a child in the 100th percentile. One centimeter is really not that much more.

(On a small side note: there is a surgery many years down the road known as a midface advancement. It's exactly what it sounds like - the bones of the midface are pulled forward to open up nasal passages and give a more proportionate look to her overall appearance. But, at this point I know nothing about it other than the plastic surgeon mentioned it happening possibly around 8 years of age.)

Another thing this surgery will do is give her forehead and orbital area a new, more typical shape. She really has no protruding bone for her eyebrows to sit on like you or I have. Her forehead also has more of a point in the middle instead of being flat and then squaring off to the temple. The surgeons will use the bone they have to sculpt and reshape the area to be more flat in front and then square off the temples.  

Using the flash on my camera helps to show how 

close her eyebrows sit to her eyes.

  This angle really accentuates the point of her forehead instead of 

the typical flatness, along with the bumps above and outward of her temples 

which is due to her prematurely fused skull bones.

So, all in all, this is a very necessary surgery as her brain is of such importance, obviously! This cranial surgery is much scarier and more invasive than her hand surgery and she's going to have quite the impressive scar to prove it. They make an incision from ear to ear going over top of her head. Long hair will cover the scar easily as she grows up, but it will definitely be a reminder of what she has endured. 

This time around we will be staying in the hospital for three to five nights, depending on how she's recovering and what the severity of her swelling is. The neurosurgeon, Dr. Steinbok, has warned us that it's going to be a hard recovery for us as parents to watch. The swelling will be at it's peak about 24 hours after surgery and she can likely be so swollen that she won't be able to see. I've been following other families that have a child (or children) with Apert syndrome and have seen the before and after photos of this type of surgery. I feel like I know what the expected outcome and recovery will be and am expecting the worst in regards to the swelling and bruising that can occur. But, I also know that it's SO different seeing a photo of someone else's child compared to seeing my own little girl in the same situation.



As the surgery draws nearer, I've come to realize how good I am at not thinking about many of the details. I am good at removing all emotion and looking at this all from a purely scientific view (as you can tell from this blog post so far!). It helps me to understand the "why" of everything and to internalize the reasons for the procedure. I go about my day-to-day as normal as possible, but I find that the thoughts and emotions of what this surgery is really going to feel like come in waves; waves that I don't really see coming until there are tears in my eyes. Kind of like the ones forming now as I write this.

I look at my beautiful little girl and I don't even see Apert syndrome anymore.

I see her joy.

I see how her eyes light up when her big sister comes into the room.

I see her interest in new things and her willingness to try over and over again to achieve success in even the smallest of tasks.

I see how quickly a smile comes to her lips and shines through her eyes when anyone - family, friend or stranger - says hello to her.

I see Julia.

I don't see her as different; I see her as unique like the rest of us.

It comes in waves, the sadness. The feeling that it isn't fair passes through me until I remind myself that we all have battles and situations we deem as unfair. I am constantly reminded that we all have hard battles to fight and each person's situation is different and unique.

I then feel thankful.

Grateful that I have trust and faith in a Creator that is bigger than anything I am going through. I cannot imagine going through these hard times without knowing that we have an angel army with us always and a God that is always faithful. He gives us the strength and courage to stand up and be there for our children, no matter what the circumstance.


Some days I wish with all my might that surgeries weren't our reality, but I know that they are. The build up to a surgery like this is hard. It tests my strength, my character, and my faith. It tests my marriage and my relationships. As the weight of it all presses on my shoulders it dares me to let it all go and give it up to God. My worry doesn't do an ounce of good so I try and let it go. These last ten months have been the hardest and most stressful months I have lived so far, but they have also been the most strengthening and rewarding. In a mere ten months I have endured more than I imagined I ever could. Julia has taught our family how strong we are and how loved we are. She brings happiness, joy, and a fresh perspective to our world.

I cannot imagine a world without her.