craniosynostosis story

background: Calvin was born in FEB 2003 just as I was finishing up my masters in cell biology and dave was finishing up his chemical engineering degree.

When Calvin was born his face/head looked a little funny. After a very difficult delivery we just figured his skull was misshapen as can often happen during childbirth, especially if the baby spends a lot of time in the birth canal.

When we went in for our 2 week appointment, the head shape was still a concern to us. The pediatrician said we shouldn't worry. So we didn't. However, it was still somewhat of a concern that Calvin's head was asymmetrical and didn't seem to be correcting.

At our 2 month appointment we pressed the pediatrician to answer our question about why Calvin's head still looked funny. He asked Dave to take of his hat so that he could see if Dave's head looked funny too. (looking back this dr. was a moron, but at the time I didn't know that I should find a new dr. if I didn't like the one I had)! Since we insisted Dave's head was perfectly fine, the Dr. agreed to do an x-ray of Calvin's head. When we got word back we were told he had a sealed L coronal suture. Craniosynostosis.

A normal skull looks like this:

A skull with a fused coronal suture looks like this:
another description:
this image shows how the other bones, sutures compensate when the coronal suture fuses early

AFter our xray we had another scan done to get a better image of the skull and we also had an ultrasound to check and make sure the brain was healthy (it was).

We consulted with doctors to figure out what would be the best course of treatment. Most doctors like to do surgery on the craniosynostosis babies at around 6 months old. This was a precarious time for us because exactly 6 months after Calvin was born we would be moving from UT to OHIO so dave could start med school.

We hatched plan. . . Calvin would have surgery mid-august. Dave would be in SLC for the surgery and a couple of days post-op. I would stay a couple of extra weeks for recovery and then join dave in ohio. After we graduated BYU I moved to my grandparents house to wait for surgery and make my hands bleed, washing and purell-ing everything trying to keep Calvin healthy so he would be ready for elective surgery AUG 14th.

The day before surgery we were at the hospital doing the pre-op blood work when we got a call from somebody in the hospital. Our surgeons retina had detached and HE (THE Surgeon) was currently in surgery getting his eyes operated on. He would be out of the office for an indefinite amount of time -- at least a month. EARTH SHATTERING news for us. We were devastated.

We decided to go ahead to Ohio and find a new dr. there. We heard the guy at Columbus Childrens was not the best so we went up to The Cleveland Clinic on the recommendation of our SLC doctor who knew and loved the cranialfacial surgeon there. Dr. Papay. The Cleveland Clinic had great facilities and was about 2.5 hours away from us in Columbus.

Surgery for craniosynostosis is done by a team of surgeons. A craniofacial plastic surgeon and a neurosurgeon.

Calvin's surgery was scheduled for OCT 1st. just shy of his 8 month mark. I was extremely stressed about getting the surgery done at the right time but it seemed to be within the right window of time.


There was something I forgot to write about and that was our decision whether or not to have Calvin operated on. Initially when we found out Calvin had craniosynostosis we were not sure whether or not we should operate on him. The operation, though not life threatening and super dangerous still had risks such as the risks with general anesthesia, bleeding, brain damage or in worst case even death. And because the surgery is cosmetic we wondered if it was really necessary. We also wondered what a craniosynostosis adult would look like if they don't get the operation (called cranial vault Reconstruction) done as a baby. These questions weren't fully answered butt as far as we could tell from our research it was the best and most accepted treatment.

There was actually a woman in our ward at the time, who had had the cranial vault reconstruction as a baby over 20 years earlier. She let us feel her head (not perfectly round) and assured us she had turned out fine! It was nice seeing her. She had a different suture that had been sealed than Calvin's so her deformation was on the skull only, not her face. Her scar was not visible at all thanks to some beautiful thick hair.

okay, now back to the story :

The preparation for surgery wasn't too bad. We had several Dr. appointments to make sure things were all okay. The surgery was to be about 5 hours start to finish and would be performed by the neurosurgeon (who does the opening of the skull just in case there is any problem) and the cranial-facial surgeon who does the majority of the case -- opening up the skull so that there is a suture line and also restructuring the brow and skull. We learned that the scar would run from ear to ear across the top of the head and would zig-zag to help hide the scar in the hair. We were prepared for a week long hospital stay after the surgery and made arrangements to stay at the Ronald McDonald house adjacent to the hospital. Dave's mom made plans to come out and help so that the baby would never need to be left alone in the hospital (and dave couldn't stay in Cleveland and miss a full week of medical school).

Babies bleed a lot during the surgery and require a blood transfusion during the operation. We decided to do a directed donation from myself to Calvin. I remember getting the paperwork for this was a pain, but it worked out eventually. Those of you who know I am a huge weenie when it comes to all things bloody know that this was a sacrifice for me. I had previously passed out at the dentist office where I was not even the patient, in my lab when I sliced my thumb, and while serving as moral support for a friend who was draining a bloody fingernail. I don't like to see blood!!

One of the things that I was worried about was the fact that Calvin had to be fasted for his surgery. He was still waking up in the night occasionally to nurse and always ate first thing in the morning and he would not be able to do either. Everything worked out well for us though. I woke him up and fed him at around 10 or midnight to feed him knowing that he wouldn't be able to eat again before surgery. When he got up in the morning we got ready and left quickly and once we were at the hospital there was enough commotion to keep him busy and occupied so he never reached that point of being hungry and inconsolable. This was a tender mercy. I thought for sure he'd be screaming while we waited for surgery to begin. They always give the littlest patients the earliest start so that they don't have to fast as long during the day. We had to be there around 6 or 6:30am.

Everything went very smoothly the day before (check-in, blood work and leading up to the operation). I was thankful.

The operation went well too.

pre surgery pics of cute little Calvin


Calvin 6 weeks old.


Calvin 4 months old.


5 months

6 months

7 months


looking back at these pictures now (in terms of the craniosynostosis story) kind of breaks my heart, it also strengthens my testimony of the fact that we are really helped through our trials. I NEVER complained about calvin's craniosynostosis - it was just life. As we all do with our children, I just loved Calvin and that was all that mattered. However, looking at these pictures makes me remember that it was difficult to walk around with a funny looking baby. I have now 3x had the experience of carrying around beautiful little girl babies that people ooh and ahh over. It is nice. It never really bothered me that carrying around Calvin people would stop and stare or defer making comments about his cuteness b/c I didn't know any better. I guess that is why looking back at these pictures now I am flooded with emotion and can really feel that grief I felt when I knew I didn't have a normal child. I am also reminded of the constant fear I had and the looming surgery. Even though I had been told all would be well I always had it in the back of my mind that he might actually die during the operation or have brain damage and never be the same afterwards. As I said, I never complained or felt short changed at all but it was difficult. I don't think I could do it again. I know that through our trials we are given help by angels in heaven and on earth and that we are given the strength we need to survive. It is a beautiful miracle.

The week of surgery and shortly thereafter

Oct 1st wed-- surgery day. We checked in early. Surgery was scheduled for 5 hours. We waited in the waiting room -- as I recall we got one call from the dr. during surgery to let us know all was going okay and then a call when it was over letting us know they were done. Even after it was over we had to wait a while before we could go see Calvin in the ICU. Overall I think he was gone from us from 7am-2pm. This was the longest I had ever been away from him before. He was still nursing so during that time at one point I had to go to the NICU to pump (the NICU had the best pumps in the hospital!

When we went to see Calvin in the ICU I didn't even recognize him. His head was wrapped and there was a drain coming out of his head. He was wearing a gown and a diaper and that's all. He was drugged up and sleeping.

The ICU has strict visiitng hours and small rooms with only a small chair for one visitor. Dave and I and his mom rotated taking shifts to be with him. It was nice to have Dave's mom there to take turns. That first night she stayed the middle of the night shift so Dave and I could sleep. We stayed at the Ronald McDonald house. I LOVE the Ronald McDonald house. I will someday donate $$ to them. It is great -- provides free food and very cheap (like $10/day or even free if necessary) housing for families who have kids in the hospital. It is so stressful to have a kid in the hospital and their services do so much to make life a little easier for those families who are there for a long long time. we were only there a few days but there are some who stay so much longer and have so much suffering.

Day 2 th- we moved to a regular floor at some point. Calvin was very sensitive and sleeping most of the time. He would throw up when people came and woke him up to bother him for vitals.

Day 3 fri- I held him for the first time after surgery. He was super swollen. I posted a sign on our door asking drs and nurses to speak softly when they came into our room so they wouldn't wake him every time they came in! :)


Day 4- sat - started to get the old Calvin back. smiling and happy

Day 5- sun - we thought we might get to go home but they decided to keep us one more day.

Day 6 - 2.5hour drive home. Lisa brought us dinner :) poppyseed chicken and chocolate revel bars. YUM:)



ONe thing I remember is how much suffering we saw in the hospital (not ours). There is nothing like a stay in the hospital to make you realize how lucky you are. I remember one child in particular who was on our floor. At the time he seemed big - since my baby was still a baby - but he was probably 2 or 3 years old. He was on his 4th surgery and an inpatient for cancer/chemotherapy/radiation etc. The hospital had become home. It was sad. I also remember another family staying in the ronald mcdonald house with us. They had a baby also. The baby had been in a car accident with both parents. The parents were both killed and the baby had brain damage and was being operated on by the same neurosurgeon we were using. The grandparents were taking care of the baby. Anyway, I saw so many people in a worse situation than we were in. There is nothing like seeing the suffering of others to make you grateful for what you have.

When we got home Calvin was back to his normal self and (we thought) our journey was over. We were so happy to have a healthy boy and so glad things went smoothly. He had stitches in for a while but they mostly came out on their own and we had no complications. Calvin looked good.


We thought of doing something freaky with his stiches showing for Halloween but we decided to just dress him up like his dad. (we have since had to throw away these shirts becuase they are too Michigan-y)!

In the Years after Surgery

After the surgery life resumed to normal. It is amazing how quickly babies recover! We figured we were done with our craniosysnostis journey.

Over the years we have had a few eye and ear issues with Calvin which are more than likely related to his craniosysnostosis. These problems are not 100% unique to craniosynostosis but they are found in a very high incidence in the craniosynostosis kids compared to the regular population.

At age 3 we noticed Calvin using one eye to look at the TV or if he dropped a toy he would turn his head and use one eye to try and find it on the ground. The eye exam at the dr. revealed near perfect vision in one eye and pretty severe astigmatism in the other eye (20/80). We got glasses and started the patching WAR which lasted several years to come. IN hindsight I believe the patching was a major contributor to the defiance we bred in him. He learned from patching to fight, fight, fight. Our eye dr. told us there was NOTHING we could do to our child which would be worse than letting him lose vision in his eye so we tied his hands, taped his face, bribed, threatened and begged him to wear his patch over the years.

Around the same time -- age 3 -- Calvin was falling behind enough in speech that we started to seek out speech services for him. I didn't know at the time that the FIRST thing you should do when a child has speech problems is check the hearing to see if the problems developing speech are due to not being able to hear properly. So, it took us some time to figure out that he had mild/moderate hearing loss in both ears.

Both of these are not major problems. However, to have a child develop with moderate deficits in 2 senses does have an effect. We had always felt bad that our kid was 1/2 deaf and 1/2 blind until age 3 and struggled to get normal hearing 'til 1st grade when his first hearing test was "normal." His vision even with glasses was very week until about 2nd grade when he finally moved to 20/40 which I think is the best we will get even with glasses.

(For those unfamiliar with how corrected vision - with glasses - doesn't come to 20/20 I will tell you a tiny bit of what I know. When one eye is stronger than the other by such a significant margin the brain learns to "shut off" input from the weaker eye so that it can get a clear picture from the good eye. Because the brain is not using input from the bad eye, the part of the brain the receives input from the bad eye becomes weaker and less responsive. Eventually the brain atrophy is significant that even with glasses on, the input from the bad eye is basically ignored and quits developing. So, when the glasses come on, even though the eye is capable of seeing, the brain need more exercise to be ready to receive the vision. That is why you patch the good eye to strengthen the bad eye. If you don't patch the good eye the bad eye may never develop at all. Most success in patching comes at the younger ages -- before age 8).

So ... now fast forward a few years to 2nd grade and the present.


We have had a bunch of testing done over the last year. It started with some testing done at the school last spring. The school did some psychological and academic testing. We were looking for answers as to why Calvin is having so many behavior problems in school .. is it because he is having trouble learning and getting frustrated (learning disability), does he have any cognitive delays, does he have a "syndrome"? He ended up having no cognitive or learning disabilities, however we did see some weakness in the visual and auditory processing. And some major differences in his sensory processing behaviors. I had never realized until I was sitting in that meeting and we were discussing the results that all of the results of this testing was pointing to his history and could easily be understood knowing that he had spent most of his developmental time with major deficits hearing, speaking and seeing. To be honest, I was kind of blown away.

We moved forward with the medical side as well --

At first glance he is easily diagnosed with ADHD but it has never seemed like a perfect fit. After a year of not believing the diagnosis we decided to go ahead and trust the dr's opinion and try some ADHD medication. It was disastrous. He did not respond well to the medication. We continued looking for help feeling that a regular pediatrician and our psychiatrist were out of their league and that Calvin wasn't the typical ADHD kid as they had thought. However, I didn't really know where to turn. What kind of dr. should I go to? who could help us? Even though we had a bunch of testing done at the school they really only tell us what the kid qualify's for in terms of special education services. They don't direct you to help if needed outside the school setting or tell you what the testing means in real life.

Over the summer I met a mom with a kid on the autism spectrum who asked me if I was getting the help I needed for Calvin -- who was melting down at scout camp where she and I were both leaders. She directed me to get some testing done at the autism institute and then by a behavioral and developmental pediatrician. I was so grateful that she spoke up. Most people when they see Calvin on the floor crying or have a huge meltdown walk away. I was grateful that she approached me and asked "Do you know what is wrong with him?" (in a kind way). I have learned though my experience with a special needs kid how to better approach other families with special needs kids too. I guess that is what life experience is all about. Like I said before, I just wish I could have learned to be a kind and understanding person without having to suffer through hard times. Sadly, I am not one of those....I am one that has to be compelled to be humble.

We had to wait a long time for these appointments. We just finished up this testing process through both clinics. another cliffhanger... but at least we are up to the present time! :)