William – Sagittal

On July 20, 2011, my husband and I were given the best gift of our lives, William was born! Immediately he brought joy to all those  around him. Everywhere we went people stopped us to tell us what a handsome little man we had. When Will was almost 2 months old, I started thinking his head might be growing a little, “funny,” though he was still the most handsome little man around! The pediatrician reassured me that all kids heads grow differently and that he’d be fine. Each time we had a doctor’s visit I was told he had a small soft spot, but this didn’t occur to me, to be a problem.

Finally, right before his 4 month appointment, Will got a rash and we saw a different doctor that day at his sick visit. I mentioned his head shape again, and she said Will had a slight soft spot. Less than a week later, on November 21, 2011, at his 4 month appointment we were told Will’s soft spot was  closed. Clearly, the other doctor had written a note in his file.

Our heads were spinning. My husband immediately started googling and we were devastated as we looked for answers. We couldn’t believe our paperwork from that appointment said, “Developmentally William looks great! Please get an x-ray of the head and then contact a neurosurgeon.” We got in the car and went right to A.I. DuPont in DE.  We took him for the x-ray and after the technician checked the results she said we could just have a seat in the waiting room in case the doctor needed to call us. This totally indicated to me that we would be getting a call. Several minutes later, we were called up to the front to take a phone call from the doctor. She told us that in fact Will’s soft spot had closed and we needed to set up an appointment with a neurosurgeon. This was the worst pain my husband or I had ever felt. We researched information to share with our families and reached out to another family who had been through the same thing and showed me to the Cranio Care Bears Facebook page and website.

We made an appointment for November 29th with Dr. Campbell at DuPont. Our second opinion from CHOP wasn’t until December 13th. Waiting for these appointments was the most difficult. We knew the outcome would be surgery at the appointment, but we didn’t know when and we didn’t know which surgery it would be. We didn’t attend the big thanksgiving festivities that year because we couldn’t allow Will to get sick if we were told his surgery would be immediately. When we met with him, Dr. Campbell informed us that Will had moderate to severe Sagittal synostosis. He did an excellent job explaining it to us and also explained the two surgeries. We were given the option between the less invasive craniotomy and the full CVR. At DuPont the neurosurgeons will perform the less invasive surgery up until 4 and a half months, CHOP does not do the less invasive surgery after 3 months.

As we weighed the pros and cons they fit us in for an appointment hours later with the plastic surgeon (after his hours) so we could hear his side of the story too. In the mean time, Will had his picture taken with Santa! We didn’t know if he would be in the hospital right before Christmas or during Christmas so we tried to cheer ourselves up that way. When Dr. Campbell informed us we could have the less invasive surgery, we truly felt it was an answer to our prayers. Not only would the chiefs of neurosurgery and plastic surgery be performing the surgery, but there was less a chance of a blood transfusion, and a much shorter procedure. We then cancelled our appointment with CHOP.

The scheduling department called first thing the next morning and we were told his surgery would be December 5, 2011. While we were waiting for the surgery, my husband and I, and our families, gave each other much support. While we knew things could have been so much worse, we also knew this was our own personal nightmare. We eventually were able to come to terms with everything that was happening and felt blessed that this is what was handed to us, and not something much worse.

In the PICU after surgery we were first told we wouldn’t be able to hold him or feed him. This was horrible as all we wanted to do was hug and kiss him. His nurse had difficulty managing his pain at first, and after some convincing, they let us take him out and feed him. We knew he was just hungry! As the days went on, the swelling increased. When my brother came to visit him, he didn’t recognize Will because of the swelling. I wondered when I would hear William’s beautiful laugh again, and when I heard it in the hospital it was the best feeling in the world. We stayed an extra day than we thought we would because Will’s blood count and heart rate weren’t where they were supposed to be. However, we made it out of there without a blood transfusion and without catheterization! They almost catheterized him at one point, but as they went to start it, he peed all over the nurse! She said she had never been so happy to be peed on. Our doctors were phenomenal and we couldn’t have been happier given the circumstance.

When we brought Will home, sleeping was the most difficult thing at first. He slept in the car seat and then we propped up his crib on text books. Finally, after a few days the doctors said he could sleep flat. We managed his pain with Tylenol and Ibuprofen. Occasionally, we had to give a suppository because he wouldn’t take the oral medicine. Will was able to celebrate his first Christmas at home and helmet free. He gave us so many reasons to celebrate! Right after Christmas is when we began our trips to Lawalls to get fitted for the helmet. I found a company on the Cranio Care Bears website, Bling your Band (http://www.blingyourband.com/), so we decorated Will’s helmet. Several times a week we traveled to DuPont for helmet, neurosurgeon, and plastic surgeon follow up appointments. Thankfully, at the time, I was a stay at home mom and could devote my days to doctors appointments. After 3 months in the helmet, Will graduated and no longer needed it!

Now, just one year after his surgery, Will is an amazing and happy little boy. At his last appointments we were told at this time he does not need another surgery, and that was music to our ears. I often worry about his head and it’s little lumps and bumps. Dr. Campbell says, “God makes better heads than neurosurgeons.” He also says as Will gets older, like all of us, he will develop tissue around his head and it will even those lumps out. We learned a lot about life (and craniosynostosis) throughout this experience and I hope to be able to help other families who are going through this by posting Will’s story.