But He's Perfect!

Noah's Story

Noah Chase came into our lives on October 22, 1999. The youngest of three children, and the only boy, we knew that our little guy had a long road ahead of him, I mean, being the only boy in a house full of girls couldn't be easy! (Thankfully, he would have his daddy to help even the score!) We had no idea just how long the road for Noah would be. 

But, I couldn't hold him. That would have to be his dad's job. I had been given too much medication and had a terrible reaction. I was holding my newborn, beautiful baby boy, and I couldn't feel him. Wayne, Noah's dad, took over and spent the first several hours holding my wonderful son, who weighed in at 7lbs. 7oz, and was 21 1/2 in. long. He was healthy as could be, and spent most of the first two days, doing what most new babies do… sleeping! The next morning, Noah came home to his anxious sisters, McCall and Sadie.

 We had been home about two days when I thought something didn't look right with Noah. Don't get me wrong, he was perfect to me, but something about his head just didn't look right. It was definitely crooked. I asked his doctor about it when we went in for his appointment. "Oh, Shelby," he said, "all babies are born with funky shaped heads." "Yes," I thought, "he is probably right." But it didn't make me feel better. Over the next weeks, it didn't seem to round out. Again, at his two-week check, I questioned his doctor. Again, I was told that he was still new and that it would round out. By his two-month appointment for his well-baby check, it seemed to be getting worse. Not only did his head look different to me, but also now, he wouldn't turn his head one way. I would try to get him to look the other way, but he just didn't want to. By this time,

something inside me was saying, "Something is not right!" So, once again, I asked his doctor. I told him that it didn't seem right to me and that I just didn't have a good feeling about it. He checked Noah out really well, and found his head to be right where it should be for his age. He did notice that Noah didn't want to turn his head the one way, but didn't seem too concerned about it. He told us to try and help him stretch that way. He said that it appeared that his muscles were a little tight on the one side, but that, once again, everything was fine with my little man. 

A similar scenario at his four-month check, by this time, it was very obvious that his head was not getting any better, in fact, it was definitely worse. And the head-turning? Well, it wasn't any better, either, and we HAD been working with him. So, again, we asked the question. And again, we were told the same thing. "It's got to be the way he's laying. Maybe you need to move his crib to the other side of the bedroom, and take a more aggressive approach to getting him to turn his head." So, we did. We tried everything. His sisters were getting tired of having to ask which side they needed to go to in order to play with him. And by six months, he was finally loosening up. He could turn his head both directions now, but his head shape still seemed to be getting worse!

The Diagnosis

 "What am I doing wrong? Why can't I make it better? What is wrong with his head?" The questions just kept coming. I knew that his doctor had told us not to worry, but now the voice inside was screaming that something wasn't right. I couldn't ignore it, but his doctor is going to think I am just a paranoid mom. His head is in the right percentile. 

Wayne and I talked about it, and we agreed, we had to ask again. Wayne even said that he first noticed it when he held him in the hospital, and that he, too, was concerned about it. I was almost afraid to ask, though, but I couldn't ignore the "voice" that kept telling me that something was wrong. So at his six-month check up, I asked his doctor about his head shape. At this point, his doctor assured me that his head was in the correct percentile and then he told me something else. He said, "Shelby, you're just going to have to face it. Noah will never have a perfectly round head. It's just the way the good Lord made him." I left feeling totally deflated. What do I do now? Do I just let it go? I mean, he is in the "normal" percentage, but it doesn't LOOK normal. I mean, he is perfect to me, but I don't want people to tease him. But what do I do? I don't even know that anything is wrong, but that feeling, I just couldn't shake it.

"Shelby, you need to talk to your sister," my mom said, as we were driving in her car. She handed me her cell phone. I could not believe what my sister, Jennifer, was telling me. She is not a TV watcher by any stretch of the imagination, but she had a long day and decided to sit down and turn on the television. She turned it on just in time to see a segment on the local about a boy named Austin, who had what they termed "flat head syndrome." "My gosh, Shelby, he looks just like Noah. I can't believe it." Then she went on to tell me about all of the things that they said could go wrong if it wasn’t treated, things like kidney problems, vision and hearing problems, learning disabilities, brain damage and the list went on and on. I just sat there listening. I didn't know what to say. Was Noah's head really so bad that it could cause brain damage? She said that Austin had to wear a helmet. Will Noah have to wear a helmet? "Shelby, it's totally correctable! It was amazing!" she told me. 

When I got home, I immediate went to my computer and pulled up the site for the local news station, KSL. I read the story about Austin, but there were no pictures. I went to the links that KSL had set up to go along with Austin's story. Link after link, hour after hour I was getting closer to figuring out what was wrong with Noah. 'Craniosynostosis', 'Plagiocephaly', terms had never heard of, much less be able to pronounce! I couldn't decide whether to be happy that I was almost to an answer, or to cry my eyes out that my son could need major surgery. The more I read, the more scared it made me, and the more confused I was, and the more convinced I was that my son had one of these two things. But which was it? Oh, please tell me he has plagiocephaly. And please tell me that it isn't major enough to warrant surgery. Please tell me that his brain is ok. My mind was overwhelmed with all of this information, but oddly enough, that voice inside that had spoken to my soul from the time Noah was just a few days old was beginning to silence. A strange feeling came over me. "This IS what my son has." I just knew it.

I couldn't sleep at all that night. I kept seeing pictures of children with heads that looked so familiar, pictures of children with swollen eyes from the surgery, and the wealth of information on things that COULD go wrong if this wasn't taken care of. I got out of bed early that next morning and made a phone call to my doctor's office first thing. He wasn't even there yet. When his doctor called me back a few minutes later, I told him about what I had read, and about the segment on KSL, and I told him, "This is what Noah has. I know it!" He said, "Shelby, that's bizarre. I've never heard of anything like that. Tell me what it's called again? I'm going to make some phone calls and I will call you back." Well, he did. It wasn't too long after this conversation that Noah had an appointment to see a pediatrician in a larger, neighboring city.

Dr. Boehm, the pediatrician, came in to see us. She asked us a lot of questions before writing on a piece of paper what it was that Noah had, "craniostenosis" was the word she wrote. She told us that we would have to see a neurosurgeon and she gave us a recommendation. She told us that they wouldn't be able to officially diagnose him without x-rays and CT scans, but that she would rather let the neurosurgeon order the tests. She said that Dr. Carey, the neurosurgeon, would have a better idea of what she was looking for, and that Primary Children's Medical Center is so much better with the children in these types of tests. So, once again, we made an appointment. I couldn't believe that my child was actually going to see a neurosurgeon. And "craniostenosis"? Was this different than what I had read about? I would have much time to search for this term, as we were about to start what I call, "the waiting game." In retrospect, I think it was one of the most difficult parts of Noah's whole ordeal. The waiting gave my mind ample time to do its thing, and I became increasingly frightened by what my sweet little boy was about to go through.

Finally, the day had come to see the neurosurgeon. It was the day that I would finally get some answers! It was the day for which I had waited 7 long months! As we sat in the waiting room for Dr. Carey, I was filled with so much love. Not only for my child, but also for these children who were waiting to see the pediatric neurosurgeon, that couldn't be good. I still didn't know what we were up against, but I knew that it had to be better than some of these children who were sitting around me.

The Neurosurgeon

 "Noah," the nurse called. "Here we go," I thought. "I'm finally going to get some answers!" After a few minutes Dr. Carey came into the room. "So, I hear your baby's got a flat head," she said. "Well, kind of, but not exactly," was my response. "No," she said, "that's exactly what he's got. It's called positional molding and he's going to have to wear a helmet." "I don't think so," I calmly replied. The look that I got from her gave me the impression that she didn't appreciate what I had just said. "Ok, tell me what you think," she said. So I did. I told her that we first noticed it when he was just a few days old. Wayne interjected that he noticed it within the first few minutes. I told her what we had been through to get this diagnosis. I told her about his neck and how he wouldn't turn his head, and on and on, as she sat looking at me in the eyes with a concerned look. I was near tears. She was very kind. She said, "So, he was born like this?" I said, "Yes." She then told us that she wanted X-rays and that she would also order a CT scan, which we would have to come back for. She wrote on her prescription pad for X-ray, "Lambdoid Synostosis." She told me that if this truly WAS lambdoid synostosis, that we had something rare here. She said that 1 in 1000 children are born with some form of craniosynostosis. Of those, around 1% is lambdoid (which would explain why his doctor had never seen it). We then left her office with the instruction to go to X-ray and return to her office when we were finished. 

The X-ray lasted a short time. We returned to Dr. Carey's office. She looked at the X-rays. She said that she couldn't really tell from the x-ray. That she could see a faint line, but that it really didn't tell her anything. She told us that the CT scan would be the best bet, but that they would have to sedate Noah and he would have to fast for 6 hours prior, so they made that appointment, as well as an appointment with a craniofacial surgeon, Dr. Morales.

June 16, 1999, Noah was nearly 8 months old. His appointment was one of the first of the day. Thankfully, he didn't have to go too long without being able to eat. The nurses were nice, but they couldn't find a vein on my little man. It broke my heart to see them poke him again and again. I left the room in tears. Finally, they found it! They started his IV. They told us that if we went with the IV instead of the oral sedation that they would be able to just give him enough to sit still for the 10 minutes that it took to do the tests. They allowed us to be with him the entire time. It was the first really hard step of the journey. To see my precious little boy laying there looking at me, but watching him be so out of it made both me and my big, old 6 foot 4 inch husband cry. As we stood there by his side, he started to squirm. The CT technician came back in the room and gave him more sedation, then she walked out of the room and started the scan again. Again, he moved. She came back in and gave him more, and left. And once again, he moved. She came back in and told us that she was giving him the maximum amount that she could give him, and told us to hope it worked. Thankfully, it did, but it put him completely out. It reminded me very much of the feeling that I had right after his birth, when they had overdosed me on the epidural.

We returned to the anesthesia recovery room and held Noah while we waited for the anesthesia to wear off. About the time he started to come around, the doctor came in with a copy of his CT scans. They showed them to us. They were amazing! I couldn't believe it! When Noah would hold down his juice, which took about an hour, they would release us with the scans to take to Dr. Morales' office.

 Dr. Morales was awesome! He had several younger student doctors with him. They came in and looked at Noah and his scans and they talked among themselves. Finally, he turned to me and told me what they were discussing. He asked me if they could take pictures of Noah's head. He said that they don't see many lambdoid cases, but that they do hundreds of cranio surgeries every year. They gave us all of the information that we needed and set us up with a surgery date, September 7, 1999. WOW, why so long? We had waited so long already. Now, we would have to wait 3 more months! What would happen to him in this time? They told us that it was very unlikely that he would have any adverse effects if we didn't do anything, but that there is always the chance of intracranial pressure, and subsequent brain damage, but again, that was rare. We left the office with our heads spinning, but we would have nearly 3 months to sort it all out.

During this time, I read everything I could get my fingers on! I found a wonderful support group on the internet and realized that I wasn't alone! We weren't the only ones dealing with craniosynostosis, and there were other people who could tell me what to expect and help me get through this! I was so grateful for CAPS (CranioandParentsSupport). I would have never made it through those months without them.

The weeks leading up to Noah's surgery would prove to be the most difficult. On one hand, it was coming so fast that it scared me, on the other, it couldn't get here soon enough. What if I forgot something? As I looked at Noah sleeping peacefully in his bed the night of the 5^th, I wondered if it would be the last time I saw him laying there looking so innocent and peaceful. I couldn't stop crying, but I couldn't let the girls see me cry. It would scare them too badly. Finally, I got the call from the hospital. We had to take Noah down for his pre-op blood work on the 6^th of September, and his surgery would be scheduled for 8am on Thursday, September 7^th. On the afternoon of the 6^th, we drove to Salt Lake City for pre-op and stayed the night. I spent every chance I could hugging on my little man, and fighting off the tears.

Morning came early. Way earlier than I wanted it to. We got up and got ready for the hospital. As we waited in the OR waiting room, the receptionist called me over to sign his paperwork. I couldn't believe that I was signing the papers to say that it was ok to "beat up" on my child. They took us back to another room where they took his vitals and several doctors came to explain their role in surgery. They told us about how long he would be in surgery (about 3-5 hours) and that they would update us at least every hour on his progress. Then, the anesthesiologist came in and played with Noah. I kissed his little funky shaped head, and Wayne hugged him tight, and the anesthesiologist took him from us. We headed to the waiting room. As the elevator door opened, I saw the face of my sister and couldn't hold back the tears any longer. I had been so strong, but I had no control. Then, when the elevator opened at the bottom, there was my mother. Again, more tears (and Wayne joined in). 

The first phone call came at about 10:30am. They had made the first incision. My heart sank. I tried to occupy myself, crossword puzzles, reading, but I couldn't concentrate. I picked up my coloring book and crayons. I colored for hours. The phone rang. It was the OR nurse calling to tell me that he was still doing well. He said that the neurosurgeon was almost done with her part and that she would be out to see us shortly. I continued coloring. Sometime shortly after the phone call, (I kind of lost track of time) the door opened and it was Dr. Carey. I was so happy to see her. She said that Noah was doing great. She told us that it would be up to Dr. Morales to finish up, and she told us that when they opened him up they were very surprised. She said that she hadn't seen anything like it before. Noah's brain had twisted. I gasped. She smiled and said that it was a good thing. His brain had twisted into a position where there was no pressure on it. She told us that he was doing great when she left, and that we would hear from Dr. Morales soon. 

Another phone call to let us know that he was doing well. Then, Dr. Morales came into the room. It was about 1:00pm and Noah was finished. I cried. Dr. Morales told us that they were taking him to the PICU and that we could see him as soon as they had him under control. We were to expect about another half-hour. Dr. Morales then reiterated what Dr. Carey had told us about Noah's brain. He said that it was different than anything he had seen. He said that we were lucky to have caught this, and that for Noah, surgery was the best possible option. Dr. Morales told us a little more. He said that Noah's brain had, indeed, twisted into a position where there was no pressure on it, and that he would have been one of those cases that they warn people about, but brush off as being rare. He smiled as I cried. I couldn't stop thanking him. These wonderful people had kept my son from having major problems. What would I have done without them? What would I have done without my sister and that segment on KSL? And if we hadn't found out what it was, would I be wondering now why these things were happening to my son? I thanked my Heavenly Father that everything worked out the way that it did. And I thanked Him for sending that voice inside me that wouldn't allow me to give up. I thanked Him for talented surgeons that could make my Noah better, and I thanked Him for allowing me to have Noah in my life for one more day! 

(this section contains some graphic information)

As Wayne, my mom, and I walked back to the PICU to see my little angel, I was trying to prepare myself for what I was about to see. After all, I had seen all of the pictures on the internet and I was prepared for the worst. There he was. His face looked beautiful. He really did look like an angel, but they hadn't managed to control his pain yet. He was still coming out of the anesthesia and I, once again, could not control myself and began to cry, tears of joy and sorrow. The ICU nurse assured me that he was crying because of the anesthesia, and that they would have his pain under control shortly. 

I sat there by his bedside looking at all of the monitors, and IV lines, and the turban on his head, and the iodine that they hadn't cleaned off his face. I didn't know that he would have so many IV's. They had an arterial line in his foot and a pic-line that ran down through the side of his neck next to his heart. They explained later that this is in case there is any problems during surgery from the anesthesia. (This one was the first to come out and the first to heal.) 

He also had an IV in his hand. This is the one that he was given all of his medication and nourishment through. He had a catheter so they could monitor the amount of urine he was producing, and lastly they had a drain that went under the turban. Dr. Morales had warned us about this drain, so I was prepared for it. The drain was there to keep the swelling down. As I sat there looking at all of the equipment that he was hooked up to, I could see my mom and my husband out of the corner of my eye, both in tears. This was a very difficult picture. Probably the most difficult. But it wasn't long before things started looking up, and quickly!

The nurse monitored Noah very closely. He was still pretty out of it because of the medication. I guess I was grateful that he was, but it was obvious to me that he still recognized his mommy's voice. I sat there talking to him and he would smile. I would sing and he would smile. He slept well for that day and night, and he really didn't look too swollen. The next morning, they took him back to X-ray to do another CT scan. They told us this was routine, and that they just wanted to check his brain to make sure that all was well in there. They said that if it checked out ok, we would be going to a regular room! Thankfully, everything looked perfect! We had our orders to move to a new room.

It took awhile for them to have a room for us, but by the time they were ready for us, we were also very ready for them! Shortly after our arrival to Noah's new room, his resident plastic surgeon came in and checked on Noah. He also cut a little v-shape in the front of his turban. Dr. Azar (the resident) told us that they did this to allow some swelling. We were prepared. By that night, Noah's face began to swell. First, you could see it in one eye. Once the swelling started, it happened very fast. Within a couple of hours, Noah was pretty swollen. It was a rough night. We would finally get him to sleep and the nurses would come in to check his vitals. By morning, he was at "full swell". He could just see out of the small slits that were his eyes. He was still in pretty good spirits, though. We asked the nurse if we could take him for a walk.

Walking was the very best thing we could do. He loved it. As long as we were in the stroller and OUT of the room, Noah was happy. He loved the water fountain, and the oversized stuffed animals, and the elevator. We walked all day, returning to the room when it was time to eat, or for medication, or when his IV would start beeping. Noah had lots of visitors. He loved seeing his Nana and Papa, and they loved seeing him. 

Noah's swelling went almost as fast as it had come. By that evening, the swelling was nearly gone, and he just had a little bit of purple around his eyes. Another rough night, but it was better than the night before. He was having a rough time holding down his food, though. The next morning, Sunday, Dr. Azar came in to see Noah. He took the turban off and for the first time, we saw what was under it. We were able to see what they had done to my precious little man. At first sight, it was very scary to me. I knew they were going to do a zigzag incision, and I knew they were going to use staples. I guess I just didn't know what to expect it to look like. All I knew is that he looked beautiful, and his head was SO round! Oh, my gosh, he looked amazing! The more I looked at him, the more grateful I was. And then, Dr. Azar said something that made my heart jump. "So," he said, "you ready to go home?" Those were some of the most beautiful words I had heard in days! "Can we?" I asked. He smiled and said that it was up to us. He told me that he had his release papers all signed and when we were ready to go we were free to! "YAY!!!!" Though I was a little nervous to take him home so soon, I knew that it would be the best thing for him. He was missing McCall and Sadie, and I knew that they would be missing him, too. So, we loaded up all of our things, and we headed for home.

The Aftermath

The minute we walked out of the hospital and got into our car, Noah was a different boy. He was so cute and so happy. He started jabbering and laughing. I loved it! We got home and waited for his sisters to come home from their aunt's house. While we were waiting, we had visitors, and LOTS of them. So many people that had been so concerned came to see our little hero! So many prayers had been offered in his behalf. Then, his sisters pulled in.

It was so hard for McCall (age 6). She was not prepared at all, even though we had tried to prepare her, for what Noah looked like. The staples were scary to her and all she could do was stand there and cry. Sadie (age 4), on the other hand, didn't even seem to notice that there was anything different about him. She was just so happy to see him. Noah was ecstatic! He was so cute! McCall warmed up shortly and life was back to normal. 

The week that followed was actually one of my favorite weeks, I think. Sure, it was still hard. He still wasn’t able to hold food down (this lasted for about 2 weeks.) We were told that it was because they had to actually reposition his brain. He also wasn't sleeping real great, which meant that neither were Wayne or I, but we had a great time with him. He was home, and safe, and healthy, and happy! One of my favorite things about this week was when we would go out. Noah had a hat that we had bought for him. He looked so cute with his hat on, and no one could even tell that he had just had major surgery. We would walk through the store and people would stop to see how cute he is (he is such a darling boy, if I do say so myself). I remember the first time it happened. This nice lady stopped to talk to my little Noah, with his hat on, and he smiled and pulled his hat off! The smile on the lady's face quickly turned to a look of horror! It was hysterical! It was also a good opportunity for me to help spread awareness for cranio. Every time someone would approach him, I found myself thinking, "C'mon, Noah, take it off!" I know, I'm warped, but it was so funny! And it felt so good to be able to laugh. I realized that I hadn't laughed in months, and now that everything was ok, I was allowed to laugh again! 

By the time we had Noah's follow up appointment nearly 2 weeks after his surgery, he was holding down his food. Dr. Morales came in and took out Noah's staples (which I was so worried about, but it didn't hurt him at all! Noah was more angry that they had to hold him still!) We left the appointment with Dr. Morales' blessing and an appointment for 6 months later.

Noah amazed me. I am still in awe over him. I am convinced that he recovered far faster than I did. His scar is no longer visible, unless you go looking for it. He is a perfect little boy. 

Craniosynostosis was a word that I had never heard of before this all happened to Noah, but it has become a huge part of my life. I decided somewhere along the way that I would always be an advocate for this disorder and that a big portion of my life will be dedicated to helping others deal with the emotions that come from having a child diagnosed with craniosynostosis. These children are so perfect and so special. I can honestly say that I am grateful for this trial in our lives. It was major enough that I was able to see what is truly important to me, and minor enough that we still have Noah with us. Noah continues to progress and there is no sign to those who don't know what he's been through. 

Oh, yes, and I have also recovered fully.

If you have any questions or would like to talk,  please feel free to e-mail me at  aunt_sherb@hotmail.com

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The information on this website should not be used for medical advice.  Medical or health advice should be provided only by medical or health professionals.

©Craniosynostosis And Positional Plagiocephaly Support, Inc.2001