Craniosynostosis

My husband and I waited in the pristine exam room with our sweet 6 month old daughter. The neurosurgeon came in and introduced himself, glancing briefly at MaryAnne just waking in my arms. (He knew what was wrong just by looking at her.) He sat down and asked us if we knew what was going on. I repeated what my pediatrician had told me: that she may have a suture in her skull that had fused early. He had a grimace-type smile on his face “Yeah,” he drew out the word, “that’s what it is.”

Breathe, I told myself. Don’t burst into tears. It isn’t cancer. It isn’t life-threatening. Breathe. Breathe.

Coronal craniosynostosis. The suture from the middle of her skull, down to her left ear had fused, possibly even before she was born. So let’s go back. Three symptoms appeared in the six short months of my daughter’s life.

Symptom #1: Following the first few days of MaryAnne’s birth I noticed her left eye socket was bigger than the other. I thought this was genetic.

Symptom #2: Around 2 months, I noticed MaryAnne’s left eye tended to drift outward. I thought it was just a lazy eye. Now I know it is because the eye was being pulled out as the skull was not growing properly.

Symptom #3: MaryAnne’s left forehead was flat – her eyebrow was not even noticeable. As she grew older, the forehead became indented. It changed so slowly I again thought this was genetic.

So how did we end up seeing a neurosurgeon? I had changed pediatricians because I was dissatisfied with the previous one at MaryAnne’s 2 month check-up. After rescheduling her 4 month check-up because of sickness, she was seen just before she was six months. I mentioned the drifting eye, and the doctor spent a lot of time comparing the eyes and studying them. I then mentioned the indented forehead, and he immediately said she should be seen by a neurosurgeon, that it could be because of a fusion of a skull suture.

And it was.

MaryAnne will have to endure a 3-4 hour surgery, with a 3-5 day hospital stay afterwards. But then she will be able to lead a normal, healthy life, as our neurosurgeon likes to say. Without the surgery, the left side of MaryAnne’s head would not grow appropriately, the right side over-growing to compensate. Developmental delays could occur and her left eye would be stretched outward to look more and more like a slit. I continue to thank God for advanced medical procedures that allow what seems like such a dangerous procedure to seem non-hazardous.

Precious MaryAnne

Precious MaryAnne

Those first few weeks after the diagnosis, I couldn’t even think about it without crying. I would rock MaryAnne to sleep with tears streaming down my cheeks, knowing what she would have to undergo at such a young age. This was a testing time for me. Who was I going to trust? Myself? Would my anxiety and worry help MaryAnne at all?

Luke 12:25, “And which of you by being anxious can add a single hour to his span of life?”

God is in control. He knew this would happen with MaryAnne. He knows how it will end. His will, not mine, shall be done. And He did not leave me. He is right beside me, upholding me, comforting me, being my everything.

Philippians 4:6-7 “do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

So I rest in Him, petitioning Him every step of the way. And He has granted me his perfect peace.  The chorus of my favorite song right now accurately describes my feelings:

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.

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2 responses

  1. Your faith is a strong testimony to all of us and we are all in prayer for MaryAnne and you and Josh and her surgeons and nurses

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