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Posted by gl.black@vanderbilt.edu on Friday, September 30, 2011 in Families.

Sofia was born on July 14th, 2006. A few weeks after we brought her home, I began to worry about her head. It wasn’t really the shape that alarmed me, it was how it felt. It was like a ridge on the top of her head. You couldn’t see it, but it felt odd. And because I nursed her, I spent a lot of time feeling her head. My husband tried to convince me I was being a little dramatic and that there was nothing wrong with her; “I happened to be completely paranoid,” he told me. As a first time mom, I tried to believe him. After I made her look at Sofia’s head, my mom assured me that she didn’t think anything was wrong. But, by the look on her face, I knew she was concerned. I immediately called my pediatrician. She told me that she wasn’t worried, that Sofia had had a tough delivery and that all babies’ heads were shaped differently. That seemed to reassure me, but only for a few days.

Later that week, I decided to just take Sofia in and let our pediatrician feel what I was feeling. At the beginning of our appointment, as I held Sofia, we talked about things like how she was sleeping and eating, etc. And she assured me that, upon looking at Sofia, she doesn’t see anything to be alarmed about. I said just feel it. And that was all it took. We went right over to Vanderbilt Children’s for x-rays. As my husband and I sat waiting with Sofia for the results in this tiny waiting room, I knew. But, he didn’t know, he thought they were all humoring me. And when we got the results, craniosynastosis, my husband crumbled. I was somewhat relieved, in a sense. It had a name and we could fix it.

We met Dr. Kelly two weeks later. We were so scared, but I knew we were very lucky to have such an amazing facility with brilliant doctors right in our backyard. Sofia’s surgery was scheduled for November 7th. She was only eight weeks old, we had to wait two months for her blood volume to increase. I didn’t take her out of the house, I was so scared she would get sick and we would have to postpone the surgery. I wanted to get it over with. It was a really long two months.In retrospect, I feel like the wait was the hardest part. During those two months, we did what any parents do, we tried not to think about it, and we researched. My mother, my sister, and I all have the same blood type as Sofia, so we donated blood for her in case she needed a transfusion. On Monday, the 6th, we were at the hospital all day for pre-op. We were assigned a Child Life specialist, an advocate of sorts, to help prepare us for what we were about to endure. There were pictures of other children during their surgeries, contact info for whom to call for anything we might need during Sofia’s stay. We went through what to expect day by day, moment by moment while we were there. It was overwhelming, but a huge relief to have some sense of what we were facing. Knowledge is power, and that’s what our Child Life specialist gave us. That night, we were terrified, but we felt empowered.

The next morning, as we said goodbye to our daughter, I felt a strange sense of calm. I can’t tell you why I felt that way having my child carried off to an operating room, but I think I believed in the people who were taking care of her. Dr. Kelley is an amazing surgeon, and his support staff just as incredible. Sofia came through surgery great and she was taken to the PICU for close observation over the next couple of weeks or so. My husband and I were able to stay with her nearly every second. There were rooms available for parents to sleep in, and one of us could actually stay overnight in the room with her. Sofia had nurses and doctors to take care of her, and we had volunteers to comfort us. It was definitely the worst thing that has ever happened to us, and there were some really ugly moments with temperature spikes and pain, but we got through it. I know this sounds strange, but we had such a wonderful experience at Vanderbilt. It was incredibly humbling, to see children that would spend a majority of their lives in and out of hospitals and know that, after we put our time in, by the grace of God, we would never have to go back. But, even for the families that have to spend too much time at Vanderbilt, we are all so lucky to have the wonderful people there, just in case.

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