We saw you today to discuss my child’s skull deformity. I appreciate your insight and your ability to answer my questions. I have just one observation that i’d like to discuss with you. You used the word “cosmetic” several times.
The word cosmetic may seem reasonable when describing the contour of my child’s head shape however, as a parent of a child born with a craniofacial deformity this word is distressing.
While I understand that the ultimate goal of our child’s long and scary surgery is to restore the intended appearance of his head shape, for us as parent’s we have concerns about intracranial pressure. As you know, published data regarding single suture craniosynostosis in relation to intracranial pressure varies from as low as 15% to 44% depending on the study. All studies conclude that the true numbers of ICP are probably under reported and that further studies are needed. We can also agree that Craniosynostosis has been linked to developmental and behavioral delays along with a variety of other concerns.
As the parent of a child with Craniosynostosis, I fear for my child’s future. I worry about his self esteem. I am involved in many support groups with thousands of parents just like me. While the studies may not be there, the parents are. I know that my child will require follow up care for many years to come. I know that my child may require more surgery. I know that so many of the children on our support groups struggle with medical issues for many years after surgery such as vision, hearing, orthodontics and more.
For these reasons I am asking that you reconsider using the word “cosmetic” when you speak to me about my child.
Cosmetic surgery is a subspecialty of medicine and surgery that uniquely restricts itself to the enhancement of appearance through surgical and medical techniques. It is specifically concerned with maintaining normal appearance, restoring it, or enhancing it.
In children, craniofacial reconstruction is done to repair abnormalities in the shape of the child’s skull and facial features resulting from birth defects or genetic disorders. Craniofacial reconstruction in children requires special techniques and planning because the surgeon must allow for future growth of the child’s facial bones and skull.
For you, the surgeon I understand that you may not see a difference when you say the word “cosmetic”. Or when you tell me that Craniosynostosis is “just cosmetic” for you and I both know that the published studies are just not there. Control groups for these studies are very small. Research is ongoing. There are many unanswered questions.
For me, the parent, when you tell me this is only “cosmetic”, this word makes me feel as if I am left with a choice. The choice to “enhance” my child’s appearance. In fact, I do not have a choice. My child has Craniosynostosis and reconstructive surgery is the only treatment for this condition.
In closing I ask on behalf of my fellow Cranio families, please stop using the word cosmetic when discussing my child’s Craniosynostosis. While I understand that surgery, unless emergent is elective, I do not want to feel like the decision has been thrown in my lap and that I must make a choice between right and wrong. I need to be reassured by you, the specialist, that my child’s craniosynostosis should be repaired for all of the reasons above.
Thank you for your time and for your understanding.
Mom of a child with Craniosynostosis