This story is mainly for the benefit of those who are looking for inspiration, hope, or just a little more knowledge about Craniosynostosis. There are many other things about Thomas that we would love to tell you someday, but for this page we are going to stick with our facts, opinions, and some feelings about his Craniosynostosis. This page is not intended to give medical advice, and anyone who believes their child has craniosynostosis should check with their pediatrician. If your pediatrician doesn't agree, you should at least insist on a 3D CT Scan, since it is the ONLY test that can prove otherwise.
Thomas was born on January 16, 2001 by natural child birth after a somewhat long and unnerving pregnancy. Everything during the pregnancy was pretty much normal except for a few minor incidences of vaginal bleeding. The bleeding was determined at birth to be caused by the placenta tearing away from the wall of the uterus. It was in no way related to the cranio synostosis. We were very happy to see him finally here.
Thomas scored a 9 on the apgar test, only because they said they don't give out 10's. His head shape was definitely odd. It was the normal oblong shape from coming through the birth canal, but it was a little bit off to one side. When we asked the nurses and doctors about the odd shape, they said that it would round out in a week or so. We were satisfied with that answer for the time being. We took Thomas home about 30 hours after he was born, and started our new life together.
2 weeks later, Thomas was due for a well check. The shape of his head was more round than at birth, but the back of his head still seamed to be off to the left side a little bit. Again, the doctor told us that it was just out of shape from the birth. He messured his head and told us that it was in the 50% range and very normal size. He also said that they would monitor the size over the next few months. We decided at that point to go along with the doctor for a little while. At Thomas's 2 month well check, the doctor referred us to a pediatrician for a better examination. The pediatrician felt his head and said that everything was fine, but she would have some x-rays done just to make us feel better. She looked at the x-rays and told us there was nothing to worry about.
We were feeling pretty good about her diagnosis, even though Thomas's head was becoming more misshapen. When Thomas was 6 months old, we moved to California from Michigan and had to find a new doctor, besides our Michigan pediatrician had since decided to quit her practice. We scheduled an appointment with Thomas's new pediatrician, Dr. VonFronque, a Kaiser doctor in Petaluma, CA. He also messured Thomas's head, and didn't show much concern. He did see what we were talking about, and referred us to a plastic surgean and a physical therapist. The plastic surgean was to look at the shape of his skull and the physical therapist was to make sure he didn't also have any problem turning his head one direction.
We saw the physical therapist first and she gave us the great news, that Thomas appeared to be completely healthy and developing ahead of average. Later the same day, we saw the plastic surgean. She introduced us to the terms Positional Plagiocephaly and Craniosynostosis. These words used to be foreign to us, but now, they are very familiar. In non-doctor english, Plagiocephaly means misshapen head and Positional refers to it being caused by sleeping in the same position all the time. Because of the SIDS campaign of always laying your infant on its back to prevent Sudden Infant Death Syndrome, Positional Plagiocephaly was becoming more common.
Craniosynostosis however, is a genetic developmental problem, usually prenatal(occuring in the womb). When you are born, your skull has cracks in it called sutures. These sutures leave room for your skull to grow as your brain develops and grows into its adult size. Sutures stay open cracks until between the ages of 2 and 3 when they begin to close and are completely closed by around age 10. When one or more of the sutures close early, this is craniosynostosis.
The plastic surgeon gave us a pamphlet that talked about the different shapes associated with each condition. The positional plagiocephaly was usually a parrallellagram shape and the craniosynostosis was more trapezoidal. Check your old Geometry books if you don't remember which is which. She also told us that his looked more like the positional plagiocephaly. We weren't convinced, mainly because he looked like that at birth, so she referred us to a pediatric plastic surgeon in Oakland, Dr. Yokoo.
Well, Thomas was now 7 months old and the shape of his head was continually getting worse. With another appointment looming over us, we finally found a little piece of information that we could run with, the names of the two conditions. We searched the internet all night and many nights after that trying to find out what was going on with our son. We found all kinds of stuff on both conditions, but nothing really looked like Thomas or described his shape exactly. Then we found the CAPPS for kids site and Noah's story. CAPPS stands for Craniosynostosis And Positional Plagiocephaly Support. Noah is a child that had Lambdoid craniosynostosis. We could not believe our eyes, when we started reading his story and looking at the pictures of his head and CT scans, our hearts sank, because at that point we knew what Thomas had. It was like someone was narrating our last 7 months back to us. If you read Noah's story, you will definitely see the similarities. In fact, his story not only touched us, but we shared it with everyone in our family and it helped them understand what we were going through. We are forever grateful to Shelby and Noah for sharing their story with us. They gave us hope at a time when we really didn't know what was going to happen.
At this point, we told ourselves that as long as the head shape doesn't affect his growth and development, there was no need for surgery. Cosmetic reasons wouldn't be enough to convince us of having the surgery done. When we had our first appointment with Dr. Yokoo(plastic surgeon) we thought she was a neurosurgeon and would be able to give us a little more insight into what we were dealing with. She took some pictures of Thomas's head and some x-rays. The x-ray did not show any signs of craniosynostosis, but it was hard to tell. She wanted to wait a month or so and then evaluate him again. By this time Thomas was 7 1/2 months old, and we read that baby's should have the surgery before they are 1 year old. Because of that, we were not really comfortable waiting another month. Dr. Yokoo said that we would see the Neurosurgeon at our next appointment with her.
The next month we went to see Dr. Yokoo and the Neurosurgeon, but there was no neurosurgeon. Dr. Yokoo could tell that Thomas's head was getting worse, and we really showed concern about the time frame and the possibility of craniosynostosis. She ordered a CT scan and set up an appointment with the Neurosurgeon for the day after the scan. We went to get the scan about 2 weeks later. They had to give Thomas an overdose of Tylenol(at least that is how they explained it to us) to make him fall asleep. There was no way he was going to stay in that machine unless he was knocked out. Dr. Yokoo said we should make sure we take a copy of the scan with us so we would have it for the neurosurgeon the next day. They gave us a copy of the regular scan, but the computers were down, so we couldn't get the 3D conversion copy.
That night we went home and studied the scans as close as we could. We were looking for any spots where we couldn't see the suture. There were a couple of frames that we could see the suture and a couple that we couldn't see the suture. Oh well, I guess we have to wait until we see the neurosurgeon. His trained eye will be able to tell. The next day we saw Dr. Peter Sun and his nurse practitioner Sue Ditmyer. They talked all about the 2 possible causes of Thomas's head shape, most of this information we already knew. Then Dr. Sun looked at the CT scan and came to the same conclusion that we had the night before. Dr. Sun said that he really needed to see the 3D scan to know whether Thomas's sutures were closed or not. Sue called down to the film archive to see if the 3D conversion was made and read by a radiologist. It had been, and the diagnosis was complete closure of the right lambdoid and partial closure of the left lambdoid.
When we heard that our hearts sank again at the confirmation of our worst fears. We had prepared for it because all the information we found pointed toward craniosynostosis, but there was still hope that it wasn't. Dr. Sun explained the risks of surgery and the details of the procedure. Now, after waiting 9 months to finally get an answer, everything seamed to be moving very fast. Dr. Sun said that the surgery would be for cosmetic reasons only. They believed that the craniosynostosis would not affect his future growth and development aside from the shape of his head. Even though we decided before that we wouldn't have the surgery done for cosmetic reasons, we changed our mind. Call us shallow, narrowminded, whatever, we don't care. We believe the decision we made was truly in his best interest. I think any parent in the same situation would do the same. You never know until you are there.
We had heard that some children who don't have the surgery later have complications with slowed development and hearing problems, some even have increased cranial pressure. When we asked Dr. Sun if he knew of any kids that didn't have the surgery and how they were doing, he said he didn't know of any. So, he claimed that not having the surgery would have no adverse affects, but there was no proof of that. All other issues aside, cosmetics was reason enough for us. Thomas's head was only half as bad as what it would become once he is fully grown. We decided to have the surgery done. The life options that would have been closed to him are now open because we took a risk. That risk by percentages, is no greater than the risk of driving your car down the road everyday to work or school.
The surgery was scheduled for 5 weeks later. Thomas was 10 1/2 months old. The night before and the morning of the surgery were nerve wracking. The morning of November 29th we took Thomas to Children's Hospital Oakland. His surgery was scheduled for 8:30 am, and they told us to be in pre-op 2 hours early. There was no-one at the reception desk until 7:30. When they finally showed up to take him in and get him ready, things started moving pretty fast. They sedated him so he wouldn't scream at them when they took him away from us. At about 9:00 am the nurse came to say they were ready for him. She took him down a short hallway and then turned to the operating room. We will never forget seeing him go away with the nurse. It was a very hard moment. They gave us a pager so we didn't have to sit in the waiting room for updates. We went down to the cafeteria and did anything we could to keep our minds off what they might be doing at that time. Every hour or so, Sue would page us to let us know that everything was going fine. After about 4 hours, we got our last page, Thomas was done and doing very well and would be in recovery in a few minutes. Immediately we jumped up and went straight to the recovery room. He looked wonderful to us. We were so relieved to see him, even though he was all hooked up to machines and multiple IV's. My wife looked up at me and smiled. That was the first smile I saw in a while. After about 45 minutes in recovery, they sent us down to ICU.
Thomas wanted to be in our arms at all times. The nurses said that it was OK for us to hold him, as long as we kept him upright to keep the swelling down. We took turns holding him for the rest of the hospital stay. Luckily they have a family house at Children's Hospital. We were able to rent a room for $20 a night. We each slept for 4-6 hours there and then took a shower every day while the other person watched over Thomas. On the second day after surgery, the swelling really started to set in. Thomas's eyes were swollen shut for 18 hours. That was probably the roughest time we had in the hospital. He was quite upset that he couldn't open his eyes. After he was able to open his eyes again, one of the nurses was making faces and playing peek-a-boo with him. The nurse got him to smile for the first time since the surgery. About 48 hours after surgery, they decided that Thomas didn't need the ICU care anymore, and they moved us to a regular room. So far there were no complications and Thomas didn't appear to need narcotics anymore. Things were looking very good and we were able to go home after only 4 days in the hospital. They sent us home with an iron supplement and instructions for keeping his head clean. That was it, we were finally going home. It felt so good to be out of that place.
It took Thomas about a week to warm back up to his surroundings and about a month to get back to the point were he was before the surgery. At the time this site was created, 3-2-02, Thomas is 13 1/2 months old and doing very well.
