Our youngest daughter, Sydney, was born on July 1, 2008, at 25 weeks gestation, weighing 1 pound 11 ounces. Just before her release from the NICU, at about 3 months old, she was diagnosed with sagittal craniosynostosis, and we were referred to Dr. Dauser (NS). We saw Dr. Dauser and scheduled surgery at Texas Children’s Hospital. We had to wait until she was at least 8 pounds for surgery, which wouldn’t be until January, when she was about 6 months old. In the meantime, I began researching online, and discovered there are doctors doing the same type of surgery with a “less invasive” endoscopic approach. This definitely sounded less scary than the ear to ear incision our current surgeon was planning to do. We live in the Houston area, and decided to see Dr. John Teichgraeber, to find out more about the endoscopic approach to surgery.
When Sydney was 6 months old, Dr. Teichgraeber (PS) and Dr. Baumgartner (NS), performed a strip craniectomy, using the endoscopic technique. Sydney spent 3 nights and 4 days at Children’s Memorial Hermann Hospital. Her surgery and recovery went smoothly. After surgery, she wore a helmet 23 hours a day for 3 months.
Sydney will be 3 years old on July 1, 2011. There are two “soft spots” in her skull now, and we can see pulsating movements in one of the spots. Last week, she had a 3D CT scan of her head, and results show gaps in her skull. We have reviewed the scan with Dr. Teichgraeber, and he has recommended surgery again to fill in the “soft spots”. Sydney is scheduled for surgery on August 9, 2011. They are planning to shave off bone chips from the surrounding skull to fill in the spots, and then cover them with absorbable plates.
At this point, we are trying to get a second opinion regarding the repair of the “soft spots” in our daughter’s skull. I called Dr. Jimemez’s office in San Antonio, but they will not see Sydney until August 24th. We are on a list to be called if they have a cancellation before her scheduled surgery date (Aug. 9th). I have also called to schedule an appointment with Dr. Hollier (PS), who works at Texas Children’s Hospital, but have only been able to leave a message, and they have not returned my call.
I have posted Sydney’s story in hopes that someone else here might have experience with this issue. Does anyone else have a child who has had surgery to fill in “soft spots” in the skull, following previous surgery? Thanks so much for reading Sydney’s story, and I would appreciate any insight or information you might have to help us.