Leigha H. - Love Quilts - 2011 Children!

Our story with Leigha started at birth. Her family practice doctor thought she had Down Syndrome from what Leigha's medical charts coined as "Dysmorphic Features with sloping forehead and lowset ears. Deemed molding by pediatrician." That started a long and scary battle for the right diagnoses and treatment of our little girl. Each well-baby visit my concerns for her progressively worsening head-shape was dismissed time and again by different pediatricians. At six months of age not only was her headshape awkward but her softspot was no more the size of a dime and hard to the touch. A seventh pediatrician looked at my daughter, felt her head and told us that it was only a tiny concern and that we would wait and see how she continued to grow.

Luckily, I got fed up and demanded attention. I sought out my own diagnosis and turned to the internet. One search after another left me empty handed until finally one anonymous soul told me to check with a craniofacial surgeon. Knowing to search the word craniofacial opened up the web pages I wasn't finding. Soon I found the word Bicoronal Craniosynostosis and my heart sank as I saw pictures of babies that looked just like my daughter.

My fears were confirmed when we met with a craniofacial surgeon on February 14, 2001. All it took was one look at her and he knew that she did indeed have bicoronal craniosynostosis which was caused by what they thought was Crouzon Syndrome.

Although a relief to finally know all my months of worrying and fretting were not just imagined. The diagnosis of craniosynostosis is one that leads you on a lifetime of ups and downs, many of us effected by craniosynostosis have coined it as the Cranio roller coaster.

At ten months old my daughter underwent an 8 hour surgery. Lost one and a half times her total volume in blood (she had a total of 4 blood transfusions) as both a neurosurgeon and a craniofacial surgeon worked to reconstruct her little skull in order to give her brain more room to grow.

Genetics dismissed the concerns of Crouzon's syndrome but did find Leigha to have Muenke's syndrome. She will have 50/50 chance of passing craniosynostosis onto her own children.

Now at the age of almost ten years old Leigha begins to prepare for her secondary reconstructive surgery because she has not grown quite right, and in her craniofacial surgeons words "Is on the cusp of mild/moderate concern on her skull growth." She puts on a very brave front and faces each new appointment and each new test like a seasoned pro. Along with surgery she has had speech therapy, has already had one CT, one MRI and is followed both by genetics and craniofacial specialist until the age of 18. Her story is one that could have been worse and every day we converse with other family members who have had multiple surgeries, multiple learning delays, and even sight, hearing, and teeth issues. She will have her next full reconstructive surgery around May 2011 as we are watching and letting her grow to avoid the higher need for third or fourth surgeries. She is being watched closely for pressure on her brain and any warning signs of that through out the next months.

Leigha is my inspiration through her positive attitude and her beauty she holds inside. Without Leigha I would not have seen how beautiful each person effected by craniofacial abnormality truly is. Leigha's diagnosis and treatment has opened windows where doors were closed and I think despite the fear our lives our enriched thanks to her craniosynostosis and I wouldn't change anything if given the chance. Through Leigha's imperfections and our fight for diagnosis, treatment and continuing treatment we have only learned and grown. Without Leigha I don't believe I would have had the opportunity to touch so many lives with my talent for art. Thanks to craniosynostosis I have been able to pay it forward and show everyone how beautiful people are despite their differences facially. I have Leigha to thank for my website beyondaglimpse.com and I have the rest of the world to thank for their compassion, love, and understanding.