The Diagnosis

I felt okay about my precious David for about 18 hours. I slept well after our pediatrician friend said he looked fine, but the next day, I couldn't get the images of those familiar babies out of my head.

I just knew he had it. I scoured the internet – it was the only resource I had at this point.

I read each and every article I came across. I remember wondering what I used to do with my free time before I had all these articles to read. I read medical journals, discussion forums, hospital web sites - anything and everything. I wanted information.  I wanted to know that David only had craniosynostosis, and not one of the syndromes that can sometimes be associated with it; Syndromes that also carried other disorders: from minor deformities to severe mental retardation.

Truthfully, I have never been so scared as when I was worrying about David before his surgery. The craniosynostis did not scare me, it was whether or not it came with something else.

I ached.

I went through waves of hope and desparation. I cried. A lot.

Chris was wonderful to assure me, support me and talk sense to me when I started getting anxious.
Eventually I started reading not only about the disorder, but how to fix it.

I found out that the surgery to fix Sagittal Craniosynostosis was brutal; they would shave our baby’s entire head, cut a zig-zag incision from ear to ear, roll all of the skin off of his head, cut up his skull and piece it back together to form a round head. He’d be under for 6-7 hours, have 2 or 3 complete blood transfusions, stay in the hospital for a week and have swelling so bad that he couldn’t open his eyes for 3 days.

I was heartbroken. I did not want David to go through this.

I remembered seeing something about an endoscopic procedure when I first googled it, so I looked into that. In this procedure, they made only two one-inch incisions at each soft spot, took only 45-60 minutes to complete the procedure, he would lose only 2 tablespoons of blood, and would go home the next day.

Judging based only on these stats, we knew which one we wanted to do, and I would travel anywhere to find the best surgeon to do it. We researched a little bit more, trying to find out where we could have this done. What we found out made my jaw drop.

The two surgeons who invented the endoscopic procedure 14 years ago were a husband and wife team who practiced at (ready for this?) University Hospital in San Antonio, Texas.

It was a Sunday afternoon and I’ll never forget the peace that flooded my heart when I read that.

I called the next day and talked to Wai, the case manager and nurse in charge. She said the next surgery date was January 14.

David would be within 2 days of 3 months old (3 months is the ideal time to perform the surgery) and it would be 4 days after we would get home from a wedding in the Dominican Republic.

I couldn't believe how perfectly the timing worked out. It would be the perfect age for him to get the surgery and right after we were to go on vacation with only David in tow.

God's timing is so wonderful.

David hadn't even been officially diagnosed, but I asked her to reserve us that spot.

The next Friday, we went to his two-week check up (although he was three weeks old at this point). Dr. Pauli walked in and I noticed his eyes weren’t looking at mine or Chris’s, but at David’s head resting on my shoulder. I already knew he had craniosynostosis, so I spoke up to hopefully let him know that he wasn’t going to have to be the bearer of bad news.

“He’s doing great, but our main concern is his head.” I said.

He agreed and went on to explain the diagnosis.

Dr. Pauli referred us to a pediatric neurosurgeon here in San Antonio. It wasn’t the one I wanted, and she didn’t do the endoscopic surgery. I asked him why he didn’t refer to Dr. Jimenez (who does the endoscopic surgery), and he said he has a long-standing relationship with the other surgeon and that she was highly respected. He also said he wanted us to be completely at peace with whomever we chose, and would send us as many referrals as we needed to feel that.

We got in the car with both boys in tow. On our way home, David Crowder’s How He Loves came on. I just lost it. I knew David had craniosynostosis, but there was something about him being officially diagnosed that made it all so real. It wasn’t the first time I cried over this, and it wouldn’t be the last.

But now the ball was rolling. Gone were the days of thinking the surgery was far off. It was time to get started.