The First Diagnosis, Xray and Specialist Song and Dance

Two months passed and we had become pretty used to Connors looks and hadn't noticed any worsening of the squished head issue. My friend came to stay for a visit and asked if his head shape was normal. She hadn't seen many babies, I said it was apparently normal for new babies and forgot about it. The next week however, when I visited the pediatrician for Connor's two month checkup, his first words were "what's happened to his head?". After a brief worried inspection he left us alone in the room to wonder while he went off, I guess to look up something. He came back with a scrap of paper he gave me that said Plagiocephaly (an incorrect diagnosis as it turned out). He gave us a brief description of what he thought was going on, which at the time was very concerning. We knew nothing about the condition and anything that might include surgery as an option when discussing a baby is bad in my books.

He sent us to an x-ray place in West New York to have some skull x-rays done (unnecessary according to our eventual specialist who could tell from look and feel). After a day driving to and from doctors and clinics, Connor was not entirely pleased at being held in place for an x-ray. We took the x-rays straight back to the pediatrician who explained that it looked like the sagittal suture of the skull that runs from front to back down the top of the skull, was prematurely fused. Normally it should still be open to allow for the first year of brain growth and initially for the molding of the skull needed to pass through the birth canal. He told us that he had some good news as he had a colleague who could pass the x-rays to a pediatric neurosurgeon in the area that could help us and hopefully avoid the queues for specialists in New York. Sounded helpful.

A strange week passed. I tried to track own this elusive colleague who had been given the x-rays. At the same time I had been calling the pediatric neurosurgeon at his office at the University of Medicine and Dentistry in Newark, New Jersey to make an appointment. He was booked up for weeks and his secretary, of course had not heard of us. The mysterious colleague had apparently done nothing with the x-rays. I eventually got in contact with the colleague, whose name I now forget and arranged to pick up the x-rays at the concierge at his apartment in Union, New Jersey. I was actually a little nervous they would be lost and I'd have to have Connor go through the x-ray process again. The secretary for the pediatric neurosurgeon softened after hearing from me too often and found us an appointment the next week.

This pediatric neurosurgeon was named Dr Jeffrey Catrambone (http://www.umdnj.edu/cgi-bin/cgiwrap/quinnaj/76a9-cdb5.cgi?Last_Name=Catrambone&First_Name=Jeffrey) and he made us wait for three hours for our appointment. His secretary kindly bothered to tell us that he had wandered off for lunch at some point and that we could do the same and she would call us when he decided to grace us with his presence. We took her up on the offer to leave the depressing, large and busy pediatric neurosurgery waiting room. More odd shaped heads and brain damaged children than I had wished to see at one time. A sad place. I particularly remember a distraught mother and her child with a very odd shaped head. She was yelling at the receptionist that someone had to make an appointment for her because her baby needed help and she had no insurance and she wasn't leaving until she saw someone.

When she finally called us to tell us to return for our appointment, we still waited another hour. He was one of the more arrogant people I have ever met. He stood throughout the appointment, which was in a tiny room with a bed and a sink - not a doctors office or treatment room - more like the kind of room where the nurse would take blood. He informed us that his approach was to work in concert with a plastic surgeon, Dr Samuel Rhee (http://www.theuniversityhospital.com/plastics/html/physicians/rhee.htm). They would perform a craniofacial reconstruction at nine months of age. As the head would have distorted through the brain growing and pushing the fused skull out of shape, the plastic surgeon would also assist with the complete reconstruction. It sounded epic and he sent us off to obtain cat scans to return to him for a second appointment and discussion of the process.

I'm still pretty angry at the late and missed diagnosis and the initial palaver of specialist referral that followed. Since corrective surgery isn't done until after three months usually, perhaps we were saved from weeks of worry by not knowing. But still.