Craniosynostosis, or craino for short, is when one or more of the sutures in a infants head fuses together too soon, changing the way the head grows. A child's sutures close gradually, one by one, until about age 2.
When Kate was about 2 months old, Emma who was not yet 2 year old threw a toy cup at Kate, hitting her right on head. I examined her head but I didn't see exactly where the cup hit. I saw a bump on her head that I thought might be from the hit, but it never bruised or got any bigger. Little did I know that it wasn't the bump I should have been looking at, and it wasn't from a hit on the head.
A couple months went by and the bump stayed the same. I kept looking it wondering if something was wrong. No one else ever said anything to me about the shape of her head, until I was out shopping with a friend and she asked if Kate's head was flat on one side. I told her, "I always thought there was a bump on the other side, do you think anything is wrong?" Like a good friend, she assured me it was probably nothing and that Kate was fine. I still wondered, and after asking a few other people about it, I finally called her doctor.
We got an appointment pretty quick. She was about 4 months old when her doctor looked at her. First, a student or intern came in and looked her over, but he didn't see anything. Then our regular doctor came in and called it something I really couldn't understand. But I do remember her saying something about her sutures in her head, and that she should probably see a specialist. They could do a x-ray, but she would really need a C.T. scan to tell what was going on, and didn't want to expose her to any extra radiation. So, I went home and waited and worried for the specialist office to call me for an appointment. I ended up having to call the doctor's office after a few days and get the number for the specialist to call myself.
Meanwhile, my sister put me in contact with a friend of hers whose daughter went through surgery for cranio. She helped me understand the terms and was a great support. It was very nice to talk to someone about my fears who had gone through the same thing and could tell me what to expect. Thank you Tanya! Tanya also put me in contact with one of the founders of Cranio Care Bears a non profit organization giving support to craino families. Shelby was great, also, and helped us through our fist trip to Seattle Children's hospital.
Tanya told me about Seattle Children's hospital, and that they had an office in Olympia. She raved about the hospital and said they were the best around, sending me links to their webpage. I had originally been referred to Tacoma General and would have had to go all the way up to Tacoma. It was very nice to be able to just go to Olympia where I was familiar with. I had to wait a few months to be seen and the wait was nerve-wracking, thinking about all the possibilities. By this time I had looked up more about her condition, which was called a birth defect. I knew surgery could be what we were facing.
When the time came, my mom and Tanya came with, because Kris couldn't. There was hardly at wait at all when we got to the office. The specialist was very nice and could tell right away that a smaller suture by her temple was fused. She said that it had the same look as another bigger suture, so, to be sure, we would need to have a CT done. The doctor also said that the surgeon would give his recommendation for surgery when he saw her. So, more waiting.
It was the beginning of July when we went up to Seattle Children's hospital for the first time for Kate's CT scan. In the paper work they had sent to us we were told she would have to be put under to have the CT done. I was very nervous about that. and that she could not eat anything after 6 in the morning.
Because my grandma lives in Renton, we were able to stay at her house the night before, so the drive wasn't as bad the next morning. I was afraid that Kate would cry the whole way in the car, not being able to nurse that morning, so being a whole lot closer was really nice. Wouldn't you know it, Kate slept all night long once I got her to sleep. I, however, couldn't sleep at all. I had to wake her up so she could nurse before she wasn't allowed to anymore before the scan.
We got to the hospital and met Shelby, and she told me to ask the nurses to try the CT without putting her under first. The nurse heard her and was kind of rude, saying something about, "When she does this everyday, then she can talk". Then she told me they always try without first. Kate actually did really well. She cried when she was strapped into the machine, but they were able to distract her long enough with a light up toy to get the pictures they needed, and it was really fast! I was so thankful it went so well. Then we had to wait a few hours for our next appointments with the surgeon, a nurse, a social worker, and the specialist, to go over the results. It was really nice that they let us do both appointments on the same day, since we lived so far away.
We ended up going out to lunch and did some window shopping to pass the time. The wait to see the surgeon and the 3 other people was ridiculous!! We waited for 3 hours in a tiny room. By the time we saw the surgeon, I almost didn't care what he said; I just wanted out of that room. They were having issues bringing up her scan on the computer, so he talked to a student and fellow that came with him about what Kate had. It was actually really intesting listening to them. When her scans came up, he showed us what suture was closed and what it was called. He said that her type of craino was pretty rare. He said that he couldn't recommend surgery for this type and it was really up to us; he would just like to wait and watch to see what it would do. If we had any concerns he told us to call and they would see her. So we were to just keep an eye out for changes and come back in three months. More waiting!!!
Over the next three months, I kept looking to see if I could see any change in the shape of her head. I would go back and forth. I think it's changing. No, I don't think it has changed at all.
From what the surgeon said, unless she showed signs of brain pressure, surgery was mainly for cosmetic proposes. I worried about how she would look in the future and if she would be mad at us for not correcting it, but it was also major surgery. There was always a chance that something could go wrong. The surgeon had said that the most common problem was blood loss; not that they lost a lot, but that babies are small and don't have a lot of blood to lose. Kris and I were very worried about surgery, as any parent would be. I wanted to cry every time I thought about seeing my baby in a hospital bed. It didn't help that I saw a lot of pictures and read stories of other babies who did have surgery. Kris was pretty adamant that he did not want to do surgery just for looks sake. He read everything he could find about Kate's type of Cranio. I agreed for the most part, but still worried.
We needed to trust God with whatever decision we made. Because it wasn't a moral decision, we just had to make a decision and trust God that it would be ok. We had told our church family about what was going on, and we had lot of prayer going out. I still needed to be reminded that God was bigger than this, and to trust that he knew what was going to happen.
October finally came and up to Seattle we went. We stayed with my grandma again and it was a very long, long night. Something else happened that night, but that's a different story. The wait was a lot better this time around. We saw the surgeon first who asked us what we thought, and he said that he didn't see any change in the shape of her head. Neither did the surgical nurse who came in with him. I was so relived because I didn't think there was a change either. He also answered our questions. He told me the thing I really wanted to hear; the shape of her head should not get worse over time, but if she had any problems down the line they could still do surgery. He emphasized that there was very little chance that there would be any brain pressure. So we decided along with the surgeon not to do surgery. Yay!! We didn't end up having to see all the other people, and were sent on our way with instructions to be back in 6 months, so they could check up on her again. What a huge relief that was!
How is Kate doing today, you might ask? She just turned one on the 23rd of January and is doing great! She is walking now, and the cranio has not affected her in any way. Do I still worry? Yeah, a little. But I am still glad that she did not have to have surgery.
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