A Little History, Pt. 2

It was only a few days after Abby was born that I noticed something odd about her head. There was a "ridge" on the top right side, near her forehead. She also had a crooked face, which I attributed to the fact that she had been firmly wedged up under my ribs for several months. I didn't really give it much more thought, believing that it would work itself out in a few weeks.

It didn't. At her 2 month well baby checkup, the doctor told me to make sure I didn't let her sleep on the same side every night. I followed the doctor's orders, but her head shape didn't get better. It was around this time that I started to notice that she had a distinct tilt. I thought it was her way of being cute and coy. She'd cock her head to the side and look at you with this sassy little expression.


At Abby's 4 month well baby checkup I voiced my concerns to the pediatrician, who referred us to a physical therapist for evaluation. At this point, I started to worry. Why isn't my baby perfect in every way? Did I do something wrong?

At our first therapy session, the PT confirmed that Abby had torticollis. This is basically just tightness in the neck, which causes babies to tilt their heads to the side. We were to go to therapy once a week and do stretching exercises at home. I wish it was that simple.

The therapist was concerned about Abby's skull and the way she seemed to favor her right eye. So off we go to UNC Children's Hospital in Chapel Hill. Now I really start to panic.

On May 22, we went to see a plastic / reconstructive surgeon at UNC. A surgeon - not at all who I wanted to be taking my beautiful 4 month old daughter to see. We drove up to Raleigh where we met up with my wonderful friend Jen. She really stepped up and helped out during a stressful time, and I am so lucky to her as a friend. She drove us from Raleigh to Chapel Hill, sat with us while we waited to see the surgeon, listened to the diagnosis, and was just so supportive throughout the whole day. Her instructions to me were, "Hold the baby; I'll take care of everything else." And she did.

The doctor examined Abby, who was surprisingly tolerant of the whole thing. The initial exam was brief. He measured her head, felt around her skull, took some pictures, and announced, "It looks like she has coronal craniosynostosis and will need surgery." At that point, I just kind of went numb. Surgery? Shit. He calmly and patiently explained what craniosynostosis is, but I really don't remember much of what he said at all. All I could think about was my baby girl's head being opened up. Thank God I had Jen there to be my ears.

We were sent down to radiology for some x-rays. I had to hold my baby while they strapped her to a table and forced her head between two foam-covered paddles. She screamed bloody murder. I can't say that I blame her. It was hard to watch. They had to redo several of the x-rays because she was squirming so much. Finally, that was done and we could go home. We scheduled a follow-up appointment and CT scan for June 14.

It is hard to get a good CT scan on a young baby without sedation. I received instructions in the mail: no food for 4 hours prior to the appointment; don't let the baby sleep on the way to the hospital. This was going to be a fantastic 3 hour drive to Chapel Hill.

Abby handled the sedation and CT scan very well. The scans took all of 30 seconds to complete, but she was down for the count for about an hour, thanks to the chloral hydrate. When she woke up she was NOT a happy baby. She was disoriented, hungry, and mad. I tried to comfort her as best I could, letting her nurse as long as she wanted, patting her on the back, singing, bouncing, walking, you name it. We took a very cranky Abby up to meet with the surgeon again and Abby's dad, Jen, and I asked lots of questions. The bottom line? Surgery.

After several weeks of increasingly irate phone calls to the OR scheduler at UNC, we set a date for Abby's surgery. September 21. Less than a month away.

She'll be in the hospital for 4-5 days, the first of which will be in the Pediatric Intensive Care Unit. Once the swelling has gone down enough for her to open her eyes and she is eating somewhat normally, we will be allowed to go home. Recovery should be 2-3 weeks, after which time she will resume PT and hopefully get back to her normal routine.

I am terrified.