How Did We Get Here?

I woke up this morning hoping it was all a bad dream. But alas, the phone calls, text messages and emails continued to roll in so I knew that it must be true.

How did we get here? Twenty-four hours ago I had a normal four-month-old. Now she needs a pediatric neurosurgeon?

Yesterday morning was like any other. I was rushing to get both kids dressed and out the door by 10 a.m. Lucy had her four month check-up at 10:30 and since we're still seeing our original pediatrician back in Woodbury I wanted to leave enough time to make the drive from our new house in St. Paul.

We got there in time and Lucy was seen right away. She weighs 13 pounds. Still a little peanut at the 25th percentile. But she's also very tall at 26 inches and still in the 90th percentile.

But there was something odd about her head circumference. She jumped from the low end of the percentile all the way to the high end in just two month's time.

At first I thought nothing of it. Maybe a growth spurt.

When our pediatrician walked in the room Lucy was laying on her tummy; a favorite position of hers. Her head bobbed up and down as she tried to watch her big brother jump about.

Laura, our pediatrician, said, "Do you notice that her head is sort of long?"

"Yes!"

I've always noticed this but just thought that was her unique head shape. I was always told to watch out for flat head syndrome and she definitely doesn't have that.

A second pediatrician's opinion prompted a same-day appointment to radiology for x-rays and an ultrasound.

I called Brian right away to fill him in on the doctors' concerns. He said he would take the first train out of downtown and I said I would meet him at the closest station.

At this point we had already been at the clinic for two hours and William was flying off the walls. I called my friend Amy at the last minute and she graciously agreed to watch William so that Brian and I could take Lucy back to the clinic for her tests.

First she had an ultrasound. She thought it was pretty cool. She kept watching the monitors and looking around. I think she liked the warm gel on her head.

After the ultrasound we were ushered back out to the radiology waiting room and then soon called back in for x-rays.

X-rays sucked.  There's no better description.

They had to swaddle her up with her arms pinned to her sides and then wrap tape around her whole body.  A straight jacket for babies.

She then had to lie on the table while the tech firmly held her head in different positions so they could take six or seven pictures of her skull.

She screamed violently.

When it was over she promptly fell asleep, no doubt completely exhausted from all her sobs.

We were then told to go home and wait for a phone call from our pediatrician.

But we live in the age of Google so of course I went to work as soon as my computer was in front of me.  When I started to see images of other babies diagnosed with similar skull deformations I knew right away this was what my little Lucy had.  The pictures of their heads were identical to hers.

Laura called around 5:30 and confirmed what I already knew.

Lucy has sagittal synostosis.  This is a condition where the top two skull plates fuse together too early.  Normally all babies have a soft spot and overall a generally soft scalp.  This allows an infant's brain to grow and for the skull to form a round shape around it.  But because Lucy's top two plates are already fusing together it's causing her skull to compensate and her head is growing in a more oblong shape.

Right now this is purely a cosmetic problem.  But if we continue to let her head to grow without intervention it will cause pressure on her brain.

Lucy's specialist will be Dr. Wood.  He is the craniofacial surgeon at Gillette's Children's Hospital in St. Paul.