A Craniosynostosis Story – Beyond a Glimpse

by PJ Mullen on August 5, 2010

in Friends of Sweatshirt Blanket

Ever since we started the Spread Your Warmth campaign we have been introduced to a number of charitable causes and even more of the amazing, passionate individuals who are behind their missions.

Today we have a guest post of sorts from a friend of Sweatshirt Blanket who is here to share her story. We are honored to have Melanie Harper talk about her craniosynostosis story and her Beyond a Glimpse project that is a resource she put together for parents that may be facing a similar battle.

Leigha was not born the little girl I had envisioned in my dreams. The elation that I felt upon the announcement “It’s A Girl” was quickly overshadowed. I was robbed of normal motherhood delights by our family practitioner puzzling over her looks, and I was confused by a quick explanation that her features resembled those of children born with Down Syndrome.

The family practitioner puzzled over what was sighted as, “dysmorphic features”, which included low set ears, a flattened forehead, eyes that were downturned at the corners, and a slight ridging above each ear. Although she was beautiful to me, a consultation with a pediatrician did little to halt my fears, her remarks were, “features uncertain”, “most likely not Downs”, “perhaps only post-delivery swelling”. To hear some doubt in the words did not ease my mind when she said she was certain my daughter would begin to round out more normally in a few weeks.

So we took home my beautiful, fuzzy haired, baby girl to be met with one pediatrician after another giving us dubious advice at each well-baby checkup. . Although, I couldn’t place my finger on the issue each day was spent worrying about all the what-if’s instead of focusing on my quickly growing baby girl.

As my daughter turned 6 months old each concern I verbalized was disregarded by one pediatrician after another. Fed up with doctors who treated me as I was an over-protective and fretting shrew of bothersome mother I finally, after fighting my family practitioner for a referral, consulted with a Craniofacial surgeon. One glance at my daughter, one feel of her non-existent fontanel, after a staggering seven pediatricians had been consulted on her head shape a specialist finally diagnosed my daughter with Craniosynostosis.

Nine years ago Craniosynostosis revealed itself to us and seated itself in our lives. Some days it’s the large elephant in the room, others its the little mouse squeaking in the background. For us Craniosynostosis is always in our lives. Leigha has Muenke’s Syndrome, which at first brought on the post-op fears of her midface not growing correctly, concerns on how teeth would grow, the possibility of learning delays, the always persistent concern of second, third, or more surgeries, and lastly the possibility of Leigha and her older brother having children with craniosynostosis due to the 50/50 chance of passing on whichever flawed gene she has. I am passionate about awareness and understanding for craniosynostosis as well as all cranial and facial abnormalities.

I have been an advocate of awareness for craniofacial abnormality for nine plus years now. I have emailed, twittered, facebooked, & myspaced my little heart out. I created a website and a youtube video all in the hopes of offering more information to families and gathering together all the groups, foundations and organizations that have helped me along the way.

I am a writer and an artist. Self-taught with a little genetic trait toward creativity. I have not had any formal training but I have recently learned that my art can touch lives in a way I never imagined. What started as a little project to share beauty of those with skull and facial abnormalities through art is turning into a huge gift for many families affected with deformities.

Beyond a Glimpse is my website dedicated to my project and my upcoming book as well as a site dedicated to sharing info and links for several facial and skull deformities. I have been told it is easy to navigate and organized in an easy to understand manner. I hope that each of you will check out the site and bookmark it so you can check back from time to time for further info on my soon to be published book.

Thank you to Melanie for sharing her story. If you, or someone you know, has a child with craniosynostosis, then check out the Beyond a Glimpse website for information about craniosynostosis, as well as resources that are available for parents.

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