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Unicoronal Craniosynostosis
Lola Celeste Poole

Our youngest daughter Lola's cranial surgery has been scheduled for May 9, 2009, at Children's Hospital in Birmingham. According to the doctors, we should be in the hospital five days, the first of which will be in ICU. Lola has unicoronal craniosynostosis, which means one of her coronal sutures (these run from ear to ear) in her skull has fused early. Surgery is required to correct this and prevent her skull from becoming even more mis-shapen, keep her mid-face from twisting and allow her brain to grow evenly.

We are getting more anxious about the operation because having an actual date marked on the calendar makes it so much more real. She will be just a few days shy of 11 months old when the doctors perform the operation. I know babies much younger than her have had to have surgery, but this is different because it's my baby.

When we first discovered Lola had this condition, which affects about 1 in 2,500 children, we were terrified, especially because we read online about babies who had multiple complications associated with craniosynostosis. However, after meeting with Drs. John Grant III and John Wellons, who are wonderful by the way, we felt much more at ease.

Dr. Grant, who is an internationally-recognized pediatric craniofacial plastic surgeon, has performed about 1,000 of these surgeries and made us feel immediately at ease with his gentle bedside manner and the matter-of-fact way he responded to our questions and concerns.

Dr. Wellons, who is a neurosurgeon, also helped us to better understand Lola's condition and see that her case is unique to her and shouldn't be compared to other children who've also received this diagnosis.

For our family Children's Hospital means our daughter will receive first-class care close to home. Having a world-renown pediatric hospital just over an hour away from our house is such a blessing. Additionally, getting to see the doctors at Children's allowed us to gain some perspective about our daughter's condition and helped dramatically ease our concerns for her future. Not only will she being having surgery performed by Drs. Grant and Wellons, but Lola will also have a long-term relationship with these physicians as they've already told us they plan to see her until she is well into her teens. I cannot express how comforting it is to know that Lola will get long-term aftercare for her condition. Her daddy and I believe completely in preventative care, so knowing the doctors will be working to catch any situations that may arise as early as possible really soothes our worries.
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