Since surgery is the only option to address the fusions caused by the mutation and that my son was severely affected by the syndrome, I always followed the Doctor’s recommendations. 18 plus surgeries later, I don't regret having used the best of what modern medicine had to offer. However, there came a point where medically necessary versus aesthetic became an issue. It made me stop and think about what would be most beneficial to my child.
Society dictates a standard of beauty that most of us can’t meet and to impose upon a child surgeries that could be a potential health risk and are not medically necessary, in the name of “ acceptance”, is moot to me. However, I wish for my child to have the same opportunities for normalcy, love and friendship any one of us deserves. For that, plastic surgery has been and remains a tremendous asset, even if in this mother’s eyes, her son cannot be more beautiful than he already is.
Of all the surgeries we have been through and we have been through all the surgeries expected when having a child with Apert syndrome, the finger separations were the hardest. Was there enough bone to make two fingers out of one, did he have enough veins to feed two fingers, would the skin graft take?
All of those were “yes”, except for the skin graft…and that meant a redo. It did hurt and my heart broke every time he flinched but after all that, after my son found the usage of his hand, his development increased ten fold. Try walking around with your hands cupped and you will get a small glimpse of what it is like for a child to adapt and function under those this circumstances.
Written by Tania, leave her a comment here.