Jeremiah – Sagittal

Jeremiah’s cranio journey began on Saturday, July 10, 2010 at the age of 3.  I had taken Jeremiah to our local emergency room because he was having an allergic reaction to something.  While Jeremiah was being treated for hives and angioedema, a nice nurse, who was not even on his case, approached me as a concerned parent.  She asked me if Jeremiah had sagittal craniosynostosis.  I told her, not to my knowledge and she began to describe the condition and printed a picture showing a child with sagittal craniosynostosis.  I was in shock that my son’s head looked just like the picture she printed.

On Monday, July 12, 2010, Jeremiah had a follow-up visit to his pediatrician as a result of the visit to the emergency room.  I shared with the pediatrician the information that nurse had brought to my attention about the sagittal craniosynostosis and her reaction was that it was a possibility.  Jeremiah’s medical history had been a roller coaster event in our lives even as far back as during my pregnancy with him. This would be just another battle to conquer.  That same day, I was able to contact Virginia Commonwealth University (VCU) Medical Center in Richmond, Virginia and got an appointment with Dr. Gary Tye, a pediatric neurosurgeon, for July 26, 2010.  At that appointment, we met with Dr. Tye and Dr. Jennifer Rhodes, a craniofacial plastic surgeon.   I left the appointment more confused than when I arrived.  Dr. Tye had a laid back type of attitude and Dr. Rhodes was aggressive in what needed to be done next.  They wanted Jeremiah to have a computed tomography (CT) scan and magnetic resonance imaging (MRI).  A few weeks went by and we received the papers in the mail that Jeremiah’s CT scan and MRI were scheduled for October 5, 2010.  These procedures would be done with Jeremiah under sedation.  After the scans, we had an appointment with Dr. Tye same day.  It was in this appointment that the doctor confirmed that Jeremiah did have sagittal synostosis.  We then had to wait for craniofacial clinic in January 2011.

In the weeks that followed, Jeremiah started to have headaches.  Therefore, as we waited to hear from the craniofacial clinic, he had to have Inner Cranio Pressure (ICP) monitoring.  Jeremiah was in for ICP monitoring from December 1, 2010 until December 3, 2010.  The results showed Jeremiah had high numbers at night with his bed at a 45 degree angle.  He had normal readings during the day.  The numbers at night explained why he was waking up with headaches.  They considered Jeremiah in the grey area.  The holidays came and went and then it was time for craniofacial clinic on January 24, 2011.  In the end, Jeremiah’s dad and I decided to go ahead with the surgery.  We selected the surgery date of March 31, 2011, which was the day after Jeremiah turned 4.  The reason why I selected this dated is because the longer we waited, the more Jeremiah would be likely to remember.  He had already been through so much in his first 3 years of life.  Jeremiah’s medical history is like reading a novel.  I was trying to spare him some uncomfortable memories.

On the day of Jeremiah’s surgery, a posterior cranio vault reconstruction, we all were a bottle of nerves.  We would get updates from the operating room by phone every couple of hours.  This was the longest 8 hours of our lives.  We were able to see Jeremiah on his way to the Pediatric Intensive Care Unit (PICU).  Dr. Rhodes informed us that all of Jeremiah’s sutures had fused and that he had signs of ICP.  It was at that time that I shared with Dr. Rhodes, the relief knowing we had made the right choice in proceeding with Jeremiah’s surgery.  This information confirmed for us that our son was not in the grey area and that Jeremiah had indeed needed to have this surgery.  Jeremiah was in the hospital 3 days and 2 nights with all of them being in the PICU.  We are grateful for Dr. Tye and Dr. Rhodes in his first surgery.

Due to other medical issues that Jeremiah has, we are currently on this cranio journey with a new team.  This team is led by Dr. Scott Bartlett plastic surgeon of Children’s Hospital located in Philadelphia, Pennsylvania.  Jeremiah needs to have an anterior cranio vault reconstruction surgery because of the narrowing at the front of his head. Jeremiah will be 5 1/2 years old at the time of his surgery in January 2013.  I am excited for this new chapter with this team.  No matter how long we are on this cranio journey, we will always do what’s best for Jeremiah.  We know through all of this, that God has his hands on us.  Thank you for taking the time to read our son’s cranio journey.

The Washington Family

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”

Jeremiah 29:11