Claire’s Story

Claire Eleanor. This is my beautiful daughter’s name. Let me tell you a little about her.  She is almost 5 years old and loves to ride her bike, play with her baby dolls as well as her 3 brothers and LOVES to eat the marshmallows out of Lucky Charms cereal!

Claire was born with a condition called craniosynostosis.  Her sagittal suture had fused together in the womb. To my understanding this is the most common type of craniosynostosis.  Her head was growing but could not expand, therefore leaving her with a “football” shaped head. It was long from front to back and narrow from ear to ear. We were told she would need surgery but it was not a life threatening condition. Still, very scary stuff!

At the time of Claire’s diagnosis we knew nothing about her condition except for the little that the pediatrician had told us and what we had researched on our own on the internet. Through a miracle of events we were introduced to Dr. Renatta Osterdock. My husband Dan and I and little Claire flew to Colorado to have a consultation with Dr. Osterdock. We were told that Claire did in fact have craniosynostosis, but that her condition would not put her brain or development at risk. But with that being said, if not taken care of, it could affect her psychologically because of the abnormal way her head would continue to grow. Before we left we scheduled Claire’s surgery and were set to return a few months later. In between the time of our consult and the actual surgery date Dr. Osterdock and her team were always available to answer any questions we had and to calm any fears.

Claire's head was very long and narrow before surgery.

Claire’s head was very long and narrow before surgery.

claire pre1    claire pre2

About 2 months later we flew back to Colorado for Claire’s surgery. First on the agenda was to do some blood work and a few tests to get information for the actual surgery day. Very early the next morning we took our sweet baby girl to the hospital where they started prepping her for surgery.  Everyone was very kind to make sure we knew what was happening and when.  In the waiting room we were updated of her surgery via computer and when she was done Dr. Osterdock personally came and relayed the message that the surgery had been a success.  Claire was then taken to the NICU for a day where we were able to hold and feed her.  After about 24 hours she was then taken to the Pediatric unit where we stayed in the room with her for a few days. She had 72 perfect stitches that went from ear to ear which we carefully took care of.  She did not have to wear any type of head wrap or special appliances. It was really amazing. When we were discharged from the hospital Claire was only taking Tylenol and we were instructed to just be very careful and not to drop her on her head!!!! It was such a relief to take her home but it also left me with more questions. Was her sagittal suture going to stay open long enough to let her head form normally? What if any complications would she have in the future?

1 month after surgery Claire is at home celebrating her first Christmas.

1 month after surgery Claire is at home celebrating her first Christmas.

Her head continued to expand over the next several months.

Her head continued to expand over the next several months.

At 9 months her head shape is normal.

At 9 months her head shape is normal.

 

 

 

 

 

 

 

 

 

 

About a month later we flew back to Colorado for a follow up appointment to make sure her sagittal suture was still allowing growth and everything seemed to be on track! Praise the Lord! Claire had not even seemed to notice what her little head had been through. A year later we went for one last follow up appointment and we were given the all clear!  She is not expected to have anymore surgery’s or complications. Although things were scary we got through them with lots of prayer and support and they now seem like a distant memory.  Claire “bear” Eleanor just becomes more beautiful each day inside and out.

At 9 months her head shape is normal.

Claire is now five years old and enjoys playing with her brother.