November 11, 2009: Our first appointment with a Craniofacial Plastic Surgeon was full of new information and new medical issues for Avery. As soon as he saw her, he let us know that she has a congenital birth defect called Craniosynostosis. This diagnosis was incredibly hard to hear, especially given the only option for treatment.Craniosynostosis is a condition in which one or more of the fibrous sutures in an infant skull prematurely fuses. This results in restricted skull and brain growth. Because the brain can not expand in the direction of the fused suture, it is forced to grow in the direction of the open sutures, often resulting in an abnormal head shape and facial features. This is why her right eye appears to be bulging.
The only way to fix this is by doing a craniotomy. This will likely need to be done when she is around 6 months of age for optimal results. Her head will be cut open from ear to ear with a zigzag incision over the top of her head. Then they will peel back her scalp, separate the skull into several pieces, reshape the skull, and put it back together with dissolving plates and screws. Her eyes will be swollen shut for 3 days, and her head will also have major swelling & bruising. She will remain in the hospital during this time.
We are not looking forward to this time in our life, but looking forward to resolving one of her medical issues. The surgery has been done by our team of surgeons many times, and 85% of the time has optimal results.
They were worried our daughter might have this, and I remember the incredibly stress and fear we felt. Our hearts go out to you and your precious baby. It's so good that technology has come to be able to fix these issues, but what an emotional and physical rollercoaster during it.
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