Lil Ben was born in August 2006. He was born via emergency C-section when he simply would not progress down the birth canal. The next day in the hospital, Ben and I noticed a ridge running from front to back along the top of his head- like a little bony mohawk. We asked the hospital personnel about it. They said it was simply from being stuck for so long. Seemed reasonable, so we didn’t worry about it. At lil Ben’s 2 week appointment, the ridge was still there and the doctor commented on his unusual head shape. I told her what the hospital said and she said she wanted to be sure. I asked her what she thought it was and she told me craniosynostosis- where the bones in the head fuse too soon and cause the “soft spot” to essentially close. She sent us for an x-ray. As I was getting in the car to go to the x-ray, I call Ben in tears. I just couldn’t believe that there was something wrong my son. When the x-ray came back we were referred to Vanderbilt Children’s Hospital. We were sent for a 3D CT scan. When we finally met with Dr. Kelly he confirmed that Lil Ben did, indeed, have Sagittal Craniosynostosis.
I had already done a lot of research, thanks to the internet and knew that would be the diagnosis. I also knew what the treatment options were. One option was a CVR (Cranial Vault Reconstruction). In this option they cut the head open, from ear to ear (the scar kind of looks like a head band) and they cut holes in the skull to allow the skull to grow as the brain grows. This is major surgery with likely blood transfusions, 5-6 hours in the operating room, 2-3 days in the Intensive Care Unit and another 3-4 days in a regular hospital room. After that, no daycare for a month.
The second option was an endoscopic surgery. A small incision is made right about the hair line and surgeons are able to cut a smaller hole in the skull than the first method. The hospital stay was more like 2 days. However, in order for this method to work the child must wear a prosthetic helmet for 23 hours a day for 6 months to help the skull re-shape itself. Based on the research, no doctor in our area did this surgery. We would have to go to a city at least 6 hours away for this option.
WHY would anyone choose the first option? It sounded so horrible. It seemed like the inconvenience of traveling and the possibility that the insurance wouldn’t cover the second option were just details. The second option was the one I had already decided on before Dr. Kelly met with us. During the meeting I told him about my research and my decision. He told me that he could do that surgery, but.........it would not be the option he chose for his child. ????*#?% Why not? He said that babies are so small that they don’t have a lot of blood in their bodies. During the endoscopic surgery, there was a vein or artery (I can’t remember) that can be nicked. If it gets nicked and a baby starts to bleed, you have very little time to cut them open to get to the artery to stop the bleeding.....he said that the chance of a baby dying using this option was higher than in the traditional CVR. He said that in the CVR surgery the skull was already open and all the necessary blood vessels were already accessible. How could I argue with that? I didn’t want my baby in unnecessary pain, but even more than that I didn’t want my baby to die!! Decision was made, we were doing the horrible sounding CVR. This decision was made in September and Surgery was scheduled for December. I went back to work 2 weeks early from maternity leave, to save up the weeks for the surgery. We scheduled the surgery for December because I am a teacher and I figured that I could use part of our Christmas break to care for him.
I don’t really remember much from those months. It all seems like a blur. Dr. Kelly likes to use directed blood donations, but the blood types had to match- no universal donors- it was too risky! Lil Ben is Type A, so am I. But my husband is Type O- so he couldn’t donate. So my mom and I both donated blood.
December came, surgery occurred and only a few things stick out in my mind 5 years later......1) he screamed bloody murder for what seemed like forever in recovery and even after they got us to the ICU 2) they pumped him so full of morphine- trying to manage his pain that he stopped breathing briefly 3) Santa Claus visited him in the ICU ;o) 4) his eyes never swelled as bad as I expected and he was sent home within 4 days.
By Spring I knew things weren’t right. My son’s head had the craziest lumps and ridges all over- especially the forehead. I asked Dr. Kelly about using a helmet to help with his head shape. He wrote the order for one....one catch insurance didn’t cover it. We had to pay half when he went for the molding and the pay the rest when he had it put on. By mid-April he was in the helmet. Every 4-6 weeks we had to go back to get the helmet adjusted. By September, I could see that the 6 months was about up and his head looked just as bad as it did when we put the helmet on. I knew we were headed for another surgery...call it mother’s instinct! That October we took the kids to Dollywood and loved it! We decided to go back for Thanksgiving and bought season passes for the following year.
In January, we went for another 3D CT scan and sure enough his skull closed up again. Dr. Kelly told me that he had to do a 2nd surgery on less than 5 patients with the same initial diagnosis during his career. I want my child to be unique, but not in that way! So we scheduled his surgery for May 2008. This time was worse for me than the first. I had already started to withdraw from family and friends in January- it was like I knew what was coming and was hunkering down and getting ready. We took two more trips to Dollywood, one in March and once in May (the weekend before his surgery). I took tons of photos of him on that last trip. I took several pictures of all 4 kids and thought - more than once- that this might be the last time my family would be happy. For some reason I was really convinced that this surgery could take my son’s life and my family would disintegrate. Lil Ben needed directed blood donations again. This time I had another teacher at work and a student of mine, both volunteer to come in. So he had three donors this time- myself, Mike and Chad. I was so thankful for them because it was really inconvenient to donate- you have to make an appointment only during certain times AND drive all the way to Nashville. I was so appreciative for the two of them!!! I love ya'll!!
May came, surgery occurred and when they called us back to the recovery room- I saw a very upset little boy. His voice was hoarse from screaming and he just kept on. He was becoming combative so I climbed up in the crib with him to help restrain him. This went on forever. I distinctly remember the anesthesiologist looking frazzled and eventually and literally put her arms up in the air and saying “There is nothing else I can do.” She walked away....what the hell? who is going to help now? They decided to roll his crib up to the ICU, with me still in it. He screamed and was combative for hours. I guess he finally wore himself out. This time his eyes swelled shut completely, he had a hard time keeping food down, we were in the ICE for 3 days, and in the hospital for 4 more days. I took a break for my daughters pre-school graduation and another day when my husband came up to entertain him. I was one to stay in the room with him and try to entertain him there. The day my husband visited with him, he had him in a wagon and pushed him all over that hospital! So funny how two people can think to handle things so differently!
So we eventually went home, he recovered, his hair grew back. When he turned 4, I knew we were headed to surgery again. By kindergarten, all soft spots should be closed. I could tell that Lil B still had some open spots- you could feel them when you ran your fingers around his head. Dr. Kelly wasn’t worried at any of the annual appointments, telling me they would probably fill themselves in before he turned 5. Well we went back about 4 months before he turned 5 and were sent for another 3D CT scan. Dr. Kelly said they needed to be filled. Uggggg..... I knew before we got there, but there is something about having the specialist confirm it. He also said that he could revise the scar that is already there and re-shape his forehead.
We decided to wait until after summer break. Lil Ben is so active and he wouldn’t have been able to go to the pool, attend soccer camp, visit the beach or doing anything physical all summer. I wasn’t even going to attempt to put him or myself through that. I figured with Christmas Break, I could schedule it like I did before and use that two weeks as part of my time with him. I would take an extra week and a half off before the break and I would use my sick days.
The summer came and went and we never really talked about the surgery. In October we had to go and get yet another 3D CT scan so that the “caps” could be custom made for lil Ben’s "holey" head. It was at this point that Lil Ben and I started talking more about the upcoming surgery. He was worried about the CT scan even thought I told him that it was just a picture of his head. I think he thought that he would have surgery that day. I took him to the zoo after the scan just to take his mind of it.
