Owen – Sagittal

On August 24, 2011, not only did our prayers get answered, but also our dreams came true for Seth, our 27- month-old son (at the time), to become a BIG brother. Owen was born at 7:22 AM by C-section. Within 45 minutes, my husband and I were able to hold him in our arms, and life felt complete. In our eyes he was perfect. We were on cloud nine as baby number two was finally here.

Twenty-four hours later, when doing random blood tests, Owen’s blood labs came back showing he had an elevated thyroid level as well as a slight rise in his bilirubin levels causing jaundice. We were discharged around noon on day three, which was a Friday, and were told to bring him back on Monday for a recheck of his blood labs and jaundice counts.

Within minutes, Owen was retuned to us by a nurse that we had not had during our hospital stay. She questioned the shape of his little head, asking if he had been born breech or premature. I said he was neither and thought nothing of her question other than knowing sometimes babies have different shapes to their heads, which normally would fix itself as time went by. Again, to us he was perfect.

At Owen’s two-month wellness visit I questioned Owen’s pediatrician because at this point we had been questioned by several people about his head shape and of course as his mommy I defended my son. On that checkup our doctor did send us to have skull x-rays to rule out any underlying condition. We received the results back and were told everything was alright. But, I remembered as I walked away the nurse saying “Mom, follow up”. For months I replayed his words, “Mom, follow up”, in my mind, always questioning his head shape. Owen’s skull was growing according to its shape and size, which didn’t seem to be an issue as it was, to us, just simply how God made our son.

At 13 months something told me to have Owen rechecked, “followed up on” as the male nurse said to me months back. So our pediatrician referred us to Children’s Hospital of New Orleans where Owen then had a 3D CT scan which confirmed he had a condition called Craniosynostosis with Sagittal Synostosis.

On January 7, 2013, our 16 month old underwent an operation per our choice called CVR (cranial vault reconstruction). The procedure is a very intense 6.5 hour operation with doctors working close to Owen’s brain. The procedure includes the removal of Owen’s fussed Sagittal suture and his skull being reshaped with the use of several screws & plates. Owen spent the first night in PICU and 4 more days in a regular hospital room. To our surprise, Owen was sitting up in bed and starting to play just 2 hours post op! Within 2-3 days IV’s were removed, and his drain tube was removed just before discharge on day 5. Throughout Owen’s journey, we have come across many wonderful people through support groups, who have all walked a day in our shoes. We have had an overwhelming amount of support from family members, friends, and church groups. We simply made it to the “other side” as they call it, in the cranio world, by the grace of God. Throughout Owen’s journey we have come together as family more now than ever, and we have seen just how strong our little man is. There are two things this journey has taught me as Owen’s mommy, they are that nothing can stop this child of mine, and with God all things are possible. I knew Owen would make a difference in this world. If by sharing his journey he helps one family get the correct diagnosis or learn of his condition, then my goal for him has been achieved. As well as for Owen to live a healthy and happy life.

By: Chrissy Adams