Trigonocephaly

Before I get to the meaning of the title, I'll give you a little background.

At Elleigh Kate's 6m checkup, her pediatrician had a hard time locating the soft spot on her head. When she found it, she said that it was pretty small, but it was fine as long as it wasn't closed. 

Fast forward to Elleigh Kate's 9m checkup and the soft spot was completely gone and there was a little ridge where it should be. Dr. Waw said she wanted us to see a Cranial Specialist. I immediately panicked and tears welled up in my eyes. She did her best to assure me it was just a precaution. 

The soft spot on babies heads shouldn't close until 12m, at the earliest. The brain grows so rapidly in the first year, that the soft spot is open so that the skull can increase in size to create room for the brain. If it closes too soon, it can cause the head to grow into an abnormal shape trying to accommodate the growth of the brain.

Dr. Waw said since she was so close to a 12m, the specialist would just make sure nothing was fused together yet, and watch her for a few months.

We got an appointment with Dr. Fearon at Medical City Dallas for Dec. 11, at 3:30. That was a week after her 9m appointment. We had a lot of time to panic, and then convince ourselves that Elleigh Kate was going to be fine.

When we arrived at the appointment, Dr. Fearon came and got us from the waiting room. Once in his office, he took a few notes, took a few pictures and measurements of Elleigh's head and within 5min diagnosed her with Trigonocephaly. He said the words surgery and I lost it! Head surgery on my baby?! Was this really happening?

The jist of this word is that Elleigh Kate's skull is shaped like a triangle. Part of her skull is already fused together. This is most likely caused by how she was positioned in the womb. Ultrasounds won't pick it up and there is nothing we could have done to prevent it.

The first two pictures below show how the center of her forehead is pointed, and the 3rd picture is the best I could find of the ridge on top of her head (it's generally, unknowingly, covered up by her bow).

The surgery will be 2hrs long and will be done with a team of about 15, including Dr. Fearon and a nuero surgeon. They will make a zigzag incision an inch above one ear, to an inch above the other ear. They will take part of her skull from the back of her head to the front, making the front of her skull flat and straight across, like it should be, and replacing the back portion with the part they took from the front. There is a layer between the brain and the skull so they won't even see the brain...I guess that provides a little bit of comfort. She will be in the hospital for two days after, one night in the ICU and one in a regular room. Thankfully, we will be able to hold her during the whole time we are in recovery! There are a ton more details but this is the basic overview.

The surgery will take place in early to mid February. Dr. Fearon's office is waiting to hear from the nuero surgeon so they can coordinate a date. 

In the mean time, we are praying for the surgeons, for Elleigh Kate, and for comfort. We never thought we would have to face something like this, but we are trusting God through all of this. It's the only way we can make it through!