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Sagittal Synostosis~Gabe's Story

Gabe Joed Easterling was born 5/17/98 at 7:20p.m. and weighed 7 pounds 2oz.  After months of being careful, he was considered a high risk pregnancy because my first child was born six weeks premature, and a low lying placenta. Gabe was born in the posterior position meaning face up instead of down.  He was a difficult delivery and a vacuum extractor was used to get him out.

At the time of his birth, Gabe had a ridge on the top of his head and a very wide forehead. I asked our Doctor (at the time) about it and he always said he was fine because his head measured within the normal range.  Gabe was a beautiful baby even though I always thought he looked different from other children.  He reminded me of an old man with a receding hair line. Being curious one day, I got on the Internet and looked up "misshapen head" -- the pictures I came across made my heart sink, especially when I found one that looked just like Gabe.  I told my husband about it and he looked at the pictures.  He got an angry look on his face and said Gabe was fine.

Then all the playful teasing came to mind. Some members of our family referred to Gabe as John Merrick, " The Elephant Man."

I was now pregnant with baby number three and Gabe was now 9 mos. old. I couldn't stop thinking about Gabe and his head. I finally made an appointment at a children's clinic in our home town for a second opinion. The pediatrician there looked Gabe over, measured his head, felt it and told me that he had craniosynostosis and that he would need surgery. He referred me to a Plastic surgeon in Utah at Primary Children's Medical Center. I went home in tears and my husband and I rushed into our Doctor's office. He ordered x-ray's and within two days called us back into his office. He confirmed that the Sagittal suture had closed and said we should go see the Plastic Surgeon.  Once in Utah, we met with Louis Morales Jr. M.D.(he is great!) He was very informative and answered all of our questions. He said Gabe would need surgery and that in cases of Sagittal, no other problems usually exist; however, he wanted us to have a series of tests and be seen by several Doctor's before the procedure. Gabe was seen by a pediatric neurosurgeon, a pediatric ophthalmologist, and a developmental test was performed by a Neuropsychologist. 

Surgery was scheduled for June 24,1999. During preparations for Gabe's first birthday we got a phone call from the Doctors office -- they wanted to know if we could come down for surgery early -- they had a cancellation and could do his surgery later that week. We were ecstatic and had two days to get ready. We arrived in Utah on the 12th of May and blood work was done that evening. Gabe was admitted the morning of May 13,1999 at 6:00a.m. Surgery lasted six and a half hours. He had total reconstructive surgery done. An incision was made from ear to ear, resorbable plates and screws were used to help reposition the skull bones. After a day in PICU (pediatric intensive care unit) he was moved to private room where he stayed for three additional days. Gabe was a trooper through out the entire ordeal. It has been three years since his surgery and Gabe is so handsome! To look at him you can't tell he ever had surgery. Gabe is a very happy child and a loving brother to his older sister Alesa and his baby brother Mikey. I thank God that Gabe made it as far as he did with no problems and that he is doing so well. 

Gabe will start preschool this fall and he also attends speech therapy at our local school. Gabe was born with a bifid uvula and has labored tongue movements while speaking. This makes it difficult for him to pronounce some words. He enjoys going to therapy and is especially fond of his speech teacher. He is growing up to be a wonderful young man. I am proud to say that I know him, not only because he is my son, but because of the kind of person he is growing up to be. I am especially grateful because I have become a better person and mother. Gabe's condition has brought our family closer together and let us know that we can make it through anything. 

Since the surgery, we have moved to Chubbuck, Idaho. We have found a great family doctor who is generally concerned not only about Gabe, but our family. He is willing to listen and is very supportive. He will follow up with Gabe's care along side Doctor Morales. 

Mark L. Mansfield, M.D.
500 S. 11th
Pocatello, ID 83201
(208) 234-2300

I've been looking for ways to help other families of children with craniosynostosis. Statewide there are programs to help . One is C.S.H.P. (Children's Special Health Program). It is a great program not only for children with craniosynostosis but other conditions as well. Gabe is seen in both the craniofacial, and the cleft lip/cleft palate clinic. It can help families depending on the individuals needs. Some services provided are: Diagnostic tests; surgery; physical, occupational or speech therapy; clinic follow-up; Information referral. Idaho also offers a child find program which can help with any developmental delays. Screening clinics are held and trained personnel will determine if the child has a delay and needs more testing. If no problems are found a tracking program is available where your child can be monitored to make sure no problems arise. This tracking program is for infants and toddlers who are at risk of delays due to a medical condition or environmental factors. 

I hope this offers some insight for parents out there.

Parents of Children with Craniosynostosis (PCC) is a support group for parents of children with craniosynostosis, whether it be a result of a complex syndrome or of a simple nature

I can be reached directly at:
PCC - Parents of Children with Craniosynostosis, 4928 Freedom Ave., Chubbuck,Id. 83202
(208)238-1979  or