Today is a very important day in my life. Let me explain….2 years ago today my youngest daughter Leah had to have surgery to correct a birth defect she was born with. It was one of the hardest days of my life. I had to hand over my 2 month old baby to an anesthesiologist and a team of doctors trusting that I’d get her back, and that she’d be okay.
Her condition was one that I’d never heard of when our pediatrician called me that night in February…Leah was only 2 weeks old! I still remember asking him to spell it and writing it down….what a long, scary word it was.
CRANIOSYNOSTOSIS
Of course I’d googled some of her symptoms that afternoon. After getting home from a routine well-baby check…what should have been routine. It was there that her doctor and I both noticed that her forehead was protruding on one side a bit. That bulge had not been there the week prior. He sent us for x-rays “just to make sure.” I didn’t even have time to panic since I was too busy reassuring my 9 year old that everything was fine. She was already worried about her baby sister. I was very fortunate that we were able to get in within the hour to get the x-ray. I wanted to get it all over with and out of the way…surely she was fine.
While browsing the web, I found out it was probably one of two things…plagiocephaly or craniosynostosis. The symptoms are very similar, but the treatment is worlds apart. With plagio the baby’s head is misshapen and requires repositioning the baby while they are sleeping to help round out the head. If that doesn’t work, the baby is issued an orthotic molding device (helmet) to help shape the head as the bones are growing and forming. I’m sure you’ve seen babies in some of those helmets.
And in ONLY 2% of the cases, the symptoms are caused by cranio. Craniosynostosis is when the baby is born with one or more skull plates fused together. All of our skull plates have to be separate to allow our brain to grow properly in our formative years. As we grow older, these plates begin to grow together. But babies need their soft spots, and if they are born with any of their plates fused together, they have to undergo surgery in order to separate them.
Always the optimist and never one to worry until I absolutely have to….I figured there was no way that she was in that 2%. In fact I’d seen pictures online of head shapes exactly like hers, and it was plagio.
So when the phone rang at 6pm and it was my pediatrician calling from home…I got nervous. Getting that phone call 2 weeks postpartum, I was an emotional mess…not to mention my husband was out of town on business. Could this really be happening to us? The description of the surgery Leah would have on her skull sounded horrendous, and I was in disbelief that they could do this to a baby.
On Valentine’s Day 10 days later, the diagnosis of craniosynostosis was confirmed. In fact, Leah’s plastic surgeon could tell the moment he walked in the room just by looking at her, and told us her case was moderate to severe. I walked out of that appointment with a surgery date in hand, and my husband and I both felt as if we were living in a movie! Shortly after that, I started my first blog in order to chronicle our journey with Leah….her cat scan, waiting and anticipating the surgery date, her surgery and hospital stay, countless trips out of town to get her helmets adjusted (she ended up with 3!) and therapy for her neck (torticollis)….I journaled it all at fearfully and wonderfully made. It was very therapeutic for me.
Two years ago today, April 14th 2008, Leah underwent “Endoscopic-assisted Cranial Vault Reconstruction surgery.” This day is one I will always celebrate….the day I handed my daughter over to God, and HE chose to hand her back!
Today Leah is a happy, energetic and thriving 2 year old. She loves to be outdoors, the playground, Sesame Street, look at and read books together and play with her sisters. There is a possibility of another “touch up” surgery in 2-3 years if her bones don’t fill in in all the right places, but I try not to worry….after all they tell me it’s only a 4% chance.
