* GABRIELA'S SURGERY WAS POSTPONED TO 10/24/2017 DUE TO UNEXPECTED INSURANCE DELAYS AND SURGEON SCHEDULE.
Craniosynostosis is a rare condition where one or more bone sutures of the skull fuses in utero. A newborn's skull is made up of many separate bones that are not yet fused together. Because the brain grows quickly in the first two years of life, it is important that the skull bones remain open. Synostosis interferes with normal growth of the brain and skull and can aslo affect the eyes.
Finding out about our daughter's condition a couple of months back was devastating. As first time parents, we never thought things of this nature would happen to us. We received a couple of misdiagnosis at first. Then after extensive research, two CT scans and many expert opinions, we finally discovered our daughter suffers from a very rare case of craniosynostosis where the frontosphenoidal suture closes prematurely.
This condition is so rare that there's minimal literature on it aside from the few reports we found. We were fortunate to have been reffered to a renowed pediatric neurosurgeon two hours from where we live to evaluate her for surgery. Surgery is scheduled for Sept 28th. After surgery, Gabriela will be in the ICU for 24 hours and may need blood transfusion. The hospital stay is approximately 5 days.
2 days ago, only 3 weeks before her surgery and after having arranged our time off from school, I received a phone call from the surgeon's scheduler informing us that Gabriela's health insurance would only cover the surgery but not the hospital stay. My heart dropped! After many attempts and long hours on the phone with the hospital billing department and my insurance company, it was determined that nothing could be done because of past disagreements between the insurance company and the hospital. The best response I got was that I have to pay out of pocket an estimated amount of $30,000 for her hospital stay, which does not include extras and unexpected costs. Both my husband and I are students and we do not have the means to afford that.
Thanks to her Godmother and her aunty creating this page, my husband and I much hope for Gabriela to have her surgery on September 28th and have the recovery treatment she needs.
Thank you for your time and kind donations.
If you're interested to learn more about Gabriela's condition check the links provided.
- Ivone Pinto
- Jesse/Arlene Lemoine
- Helo Rosa de Oliveira
- Celio Junior
- Cristiane Targino S.
Organizer and beneficiary
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