Almost Five Years

I can't believe it has been almost five years since we went through this diagnosis and decision with Claire. I have had several people (strangers) contact me about the blog recently and usually they are asking for an update. I thought it would be nice for me to have something here for people that land here looking for information. I remember the countless hours I spent searching the internet for information and answers and feeling so helpless. If someone has made/is making a difficult decisions like we did, maybe this post will help them.


It was interesting to look back and this blog and read some of my posts. One thing that struck me was the concern over how small her head was. It is strange to me because while her head was indeed measuring very small, I have never looked at her and thought it looked small on her body, then or now. Weird.


Another thing that stood out was that I wrote that the Dr. in Dallas told us that the ridge on her head would likely become less noticeable over time. I didn't remember that. But indeed, I swear I cannot even see it anymore. Just recently I was thinking 'huh, I don't even think I can see it'. So it seems that he was right about that, thankfully.


The last thing I noticed is that I said we felt that we'd maybe always second guess our choice or we'd attribute anything weird to the condition. I can honestly say that I have never second guessed and never attributed or suspected anything about her was related to craniosynostosis. In fact, I would say that we left it behind in Dallas that day and never looked back. I am so grateful that we found that kind of closure to the matter.


So for anyone here because you are in the same place we were almost five years ago (especially with metopic cranio), obviously I cannot tell you what to do. But I can tell you that I am so happy with our decision. Keep searching for answers. Keep talking to doctors until you feel comfortable, if needed. And if you need to go to Dallas like we did, do it. Dr. Fearon is arguably one of the best in the world for this. He has seen it all and I so valued our appointment with him and was so impressed with the time he gave us, both in quality and quantity. Understand your options and the pros/cons and go with your gut and don't worry about what others around you think. I know there were those who questioned our decision but they were not in our place.


Claire is a happy, healthy, smart, normal 5.5 year old. She started kindergarten quite young (having just turned 5) but is loving it and doing so well. I did a quick look through pictures and found one of her having her face painted this past summer and it was a great look at her forehead. So below is her forehead, 5 years later, and ridgeless in my opinion.


To any mom or dad out there scouring the internet like I was years ago, I know how you feel, I am so sorry for your worry and your sleepless nights, and good luck in making a decision that is best for you and your baby!

The Resolution

Why does the air feel so wet?! We really underestimated the humidity in Dallas in April. Arizona has us so unused to humidity. Claire did great on the flight. She slept the whole way and everyone complimented us on what a good baby she was. I am sure they were pleasantly surprised since she was squawking quite loudly while we waited in the terminal!

We went to breakfast this morning and when we got back I had a message on my phone from Dr. Dallas's office. They said his morning surgery was cancelled and he had asked if we would come early if possible. We quick got ready and left ten minutes later. Unfortunately, I didn't have time to get my questions together or have anything with that I could take notes on but it probably wasn't needed.

Dr. Dallas was very pleasant and spent a lot of time with us. He said he wanted to pretend that we hadn't seen any other doctors about this so he would just explain things as though we didn't know anything to avoid glossing over anything.

He started by asking us to tell us the story so far. I started by telling him about the pediatrician sending us to Dr. Mesa. He asked who it was and said, "Yes, I know him." I then told him that although I had no concrete reason, I did not feel comfortable with him. Dr. Dallas replied, "That's not surprising." So big score for my mommy intuition! Then I told him about Dr. Phoenix and our experience with him.

Then Dr. Dallas launched into his assessment and opinions. First, he agrees that Claire's case is not cut and dry. There is no easy yes or no answer. He said that the two major reasons for surgery are cosmetic, to make children look and feel "normal", and to make sure that the brain is getting nourished and growing as it should. (If there is too much pressure, due to too little room, the blood vessels may not be feeding the brain appropriately. And then there are the other problems caused by pressure.) He, like the other doctors, feels that Claire's case is not a concern from a cosmetic perspective. He also believes that her ridge will become less noticeable over time.

Dr. Dallas also doesn't see anything that tells him that there is anything concerning going on with her skull or brain right now. He feels that the other sutures of her skull are compensating for the suture in the front that is closed. There is no evidence of elevated pressure in her skull. He was not concerned about the lack of fluid in front of her brain. He said that he and his neurosurgeons don't think that is a problem (in general, not just with regard to Claire).

Most important to him was that she is meeting all of her developmental milestones. He repeated that he thinks she is a normal child and will continue to be a completely normal child. He is not concerned about the size of her head, but could not explain why her head is so small. He just thinks she has a small head and as long as it continues to grow it will be fine. Again, he would only be concerned about that if she was having delays.

Dr. Dallas would personally recommend a wait-and-see approach. He even said that's what he would do if it were his child. He also felt that the best time to operate on a case like hers would be later, at around 18 months, because the skull can tend to go back towards the way it was and the older the child the less likely that is to happen. He does not think she will have problems in the future but admits that it is definitely possible. He is happy to review pictures and progress by email or in person to help us be sure everything is fine. He acknowledged that we will attribute any problem or weird behavior or whatever to her condition, but we probably would with or without surgery. That is just something we will have to learn to live with and be at peace with.

We also addressed another of my concerns, the medical literature on development and craniosynostosis. I told him I had read a bunch of studies that pointed to problems, even though they didn't have the best methods and acknowledged their own flaws. He dismissed them all with a wave of his hand and said, "Those are all terrible studies." He said he only respects the research of one person. That researcher believed she would find a link between craniosynostosis and delays but has now published three studies following the same patients in infancy, at age 3, and at age 7, all showing no difference between "normal" children and those having craniosynostosis.

Dr. Dallas said there were three doctors in the Phoenix area that he would recommend if we wanted to go that route. Dr. Phoenix was second on the list. He also said he understands why Dr. Phoenix said he would lean towards surgery and we discussed how Dr. Phoenix also said there was no problem with waiting to make our decision. I mentioned how Dr. Phoenix had done a fellowship with the Dallas clinic and Dr. Dallas laughed and said something that Kyle and I interpreted very differently. He said, "Dr. Phoenix is good in spite of his fellowship here, not because of it." I took that to be a compliment to Dr. Phoenix but Kyle took it as a jab at him. Hmm, at least he is on Dr. Dallas's short list, which he said he would disavow all knowledge of.

Before we came here we hoped one of two things would happen. Either Dr. Dallas would tell us that Claire needed surgery and then we would feel it was really needed and justified, or he would give us good and compelling reasons why she did not. We just wanted to be able to feel comfortable with our decision. Before we came we did not really want her to have surgery (who does), but we thought it was necessary and we were scared not to have the surgery and what could happen. Now we are not afraid anymore to not have surgery. We feel comfortable to forgo it for now, and see what happens as she grows. There were times when we wondered whether going to Dallas was necessary but now we are very glad we came. We feel much better. As Dr. Dallas pointed out, he does this every day and he is one of the busiest doctors with these types of procedures. In other words, he is truly an expert in this field.

We want to thank you all again for following Claire's story and for thinking of us, praying for us, meditating for us, or whatever it is that you do. We know many people were praying that we would find clarity after this appointment and we both feel that we did, so thank you. We are happy that she does not need to have surgery but Dr. Dallas is right that we will always wonder and worry about her condition and her development. We will just have to pay attention and hope for the best.

Thank you again from Kyle, Claire, and me!

Another Opinion. More Confusion.

In one way it is nice to know that by the end of the week we will have all the opinions we intend to get. On the other hand, we will have to make our decision. And it isn't getting any easier.

Today we saw the neurosurgeon who works with Dr. Phoenix. When the surgery is done there is one plastic surgeon and one neurosurgeon who work together.

The neurosurgeon looked at the CT scan that we brought. She first said that she thought there was enough room. Then she started showing the scan to us and explaining what we were looking at. For the most part she showed us that there was fluid in all the places there should be, not too much and not too little. Except for the front. She said that when someone is lying down their brain settles toward the back of their head and there should be fluid visible in the front, which there was not. She said that was a sign that her brain was pretty tight there.

She wasn't at all concerned about the soft spot and said that could be closing already anyway. She was, however, concerned about the size of Claire's head. She didn't think there was any obvious areas where Claire's skull was compensating. She then measured our heads to try to determine what Claire's potential should be. I have always thought Kyle has a small head because I can wear his fitted sports hats. Sure enough we measured at exactly the same size but the joke's on me because his was 50% and mine was 75%. So apparently he is completely average and I have a big head! Anyway, that told her that we would expect Claire's head to be bigger. Further evidenced by the fact that her height and weight have always been in that 50-75% range.

The doctor said that the problem is that everything is fine now but we have no way to look into the future and determine whether this will become a problem. Her concern is that the small size of Claire's head could mean that her brain could run out of room and if we wait until there is a problem then damage could already be done.

So we're stuck in the same place. If we do it, there are risks, which scare us a lot. A Lot. And she is fine right now. We keep looking at her and just thinking that she is perfect. It is hard to go through with an operation that she doesn't need now, and would possibly never need.

But what if she does need it down the road and we should have done it?

So we're still feeling a bit stuck. I guess if we are honest we really feel like we should do it but we are just very scared. We also think it is unlikely that Dr. Dallas will change his mind and he will say that she doesn't need it. So how do we go ahead with it if we have three doctors saying she doesn't need it (Dr. Mesa and his neurosurgeon and Dr Dallas) and two doctors saying she does. Our opinions are conflicting and so are our feelings.

So I guess that's where we are. We'll be leaving for Dallas on Thursday and the appointment is on Friday. I am not sure whether I will be able to update until we get back. But we'll let you all know what we find out. I hope I made sense here because I am sick and my brain is in such a fog. Kyle has been sick too so hopefully we are all well for this trip.

Claire's 9 Month Check Up

Today was Claire's regularly scheduled well-child pediatrician visit (for 9 months old). Since Kyle had to work I had my mom come to be a second set of ears because I had a lot of questions.

She weighs 19 lbs 5 oz (65th percentile) and is 28.25 inches long (75th percentile). But her head circumference was 16.25 inches, which is less than the 3rd percentile. In fact, when I looked up a chart online it came in at 1.2%. This was pretty alarming to me. Here is how her head measurements have gone over time:

Birth: 5%
2 Months: 10%
4 Months: 25%
6 Months: 5%
9 Months: 1.2%

For those of you unfamiliar with percentiles for growth, saying she is at 5% (for example) means that only 5% of children have smaller head circumferences. So at this point, only 1.2% of 9 month old children have smaller head circumferences than she does.

A measurement in and of itself is not always the most important thing. It is more important to remain at a consistent growth pattern. I am more concerned because it seems her head is not growing proportionally with the rest of her body. But 1.2% alone is scary to me anyway.

Her pediatrician asked whether we had followed up on her referral (to Dr. Mesa) and I told her the whole story to this point. She is very interested to hear what we learn next week. She was familiar with both local surgeons and told me she thought both were very good. I shared with her our opinions and preference for Dr. Phoenix and she was glad to hear my feedback since she said she sends a lot of patients to Dr. Mesa. Oh, and for good measure she also called Claire a Klingon again. Actually, she said, "She looks like that Star Trek character." It seems to my mom and me that she just doesn't get that it could be taken offensively. Several of you reading this have expressed horror that she had said that last time. Honestly, I really like her as a pediatrician and the fact that she is even aware of this condition is rare among pediatricians. I guess that is just her personality and I really don't think she means any offense by it. It is annoying though.

She also felt Claire's soft spot and seemed concerned that it was smaller than she would expect (the size of a fingertip). When I asked her if that was abnormal she simply said, "I think she will need the surgery."

Thank goodness we have our appointments next week. We really need to have our full set of opinions and get to making our decision. Waiting is killing me.

Another thing I should mention about the head size that I don't remember if I have already written here.... we asked Dr. Phoenix about her head size and it's failure to follow a normal growth curve. He said that with craniosynostosis that because the head grows abnormally that circumference size doesn't necessarily give you an accurate idea of head volume. Her head is probably growing taller than it should due to the restrictions so it's possible the circumference is deceptively small. In other words, if you were to compare head volumes for children rather than circumference she probably would not be so far behind. Obviously circumference is just a convenient way to get an idea of head size. Nonetheless, I think the change in growth pattern indicates that her head is growing more improperly than you may guess by looking at her.

Lastly, we also discussed milestones with the doctor. She asked if she could sit up unassisted and mom and I laughed. She could take her first steps any day now. She stands unassisted! Anyway, we spent more time on language since that is my major concern. She confirmed that it is really too early yet to know anything. You wouldn't expect any words yet and she asked if Claire does 'mamamama' and 'dadadada', which she does. She also demonstrated for the doctor the way she angrily uses a 'buhbuhbuh' sound when she is mad! She asked if Claire has her own opinions. Boy, does she!

I guess that is all for now. I'm sure I'll post after her appointment on Monday. As always, thanks for reading and for all of your support.

Claire is 9 Months Old!

Claire turned 9 months old on Wednesday! This jar is more of a bongo to her than a dog treat jar. The dogs sure come running when she plays it though! Gone is the completely innocent baby and in her place is a sassy little thing with a mind of her own! She knows the word “no” (very common in our house now) and when you say it to her she will either laugh or throw a fit, depending on her mood.

I don't really have an update at this point other than just what's been going through our heads. As though I could coherently lay that out for you. We've been really struggling under the weight of this impossible decision. We still don't have all of the opinions we would like to get and only time will tell how those will figure into what we've been thinking so far. But we have had a really difficult couple of weeks.

Shortly after meeting with the latest surgeon, Dr. Phoenix, I would say we were leaning toward having the surgery. But I tried to do what I do, which is research. I sought out as many medical journal articles as I could that dealt with developmental delays and/or surgical treatment for metopic craniosynostosis. I started to try to read through them with the idea that I would be able to layout the overall "take-home" messages from each. But what I found really left us more confused than ever.

Generally the articles deal with examining patient records. These articles go back and revisit patients who had metopic craniosynostosis (and sometimes other types as well) and try to find out how many have experienced developmental delays or behavioral issues as reported by their parents or medical records, if available.

The general consensus is that children with metopic craniosynostosis have a higher prevalence of delays and behavior disorders than the general population. Different studies report it anywhere from 30% to 60% of the patients, which is 3 to 5 times higher than the general population. The issues are often speech delays (specifically language acquisition) but can also be behavioral issues (for example, ADD).

The least helpful part of these articles is that there is definitely no agreement among researchers as to whether surgery is helpful. Some report that these issues are less prevalent among children who have had surgery, some say they are more prevalent, and some say there is no difference. All say that "further studies are needed". There are so many unknowns. It is known that after a surgery the brain will take on a new, more normal shape within a couple of days. But is that too late, does it make a difference, or did the problems really start earlier? Was there just something that went wrong during development that caused the problems with both the brain and skull independently? Nobody knows for sure. So trying to learn more hasn't really been helpful.

There are other factors to think about, too. Such as the fact that we’re both terrified to have any type of surgery done that is unnecessary, for fear that the unthinkable could happen however unlikely that may be. Also not to be taken lightly is the cosmetic factor. We all know that people can be cruel and we are dealing with Claire’s face. Her pediatrician even found it amusing to compare her to a Klingon. I wasn’t laughing and I don’t think Claire will be one day either. It may be that it will be less noticeable or not a big deal later on but it is something that comes up when we discuss all of the factors.

So we have gone back and forth a million times. I probably change my mind about once every hour. We have an appointment with a neurosurgeon on the 18^th. The second plastic surgeon (Dr. Phoenix) asked us to see her before we make a decision. And we also have the appointment in Dallas later that week. By the end of the month we will probably have all the opinions we can deal with and we will have to see where we are at that point.

Thank you all for your thoughts and prayers and continued support. We know a lot of people are visiting the blog but aren’t sure who you all are. We would love to have you comment and leave us a note! If you don’t have the proper account you can choose the “anonymous” option in the comment section and leave your name in the message. We would love to hear from you! Also, I am always open to any questions you may have.

Goodnight, Sweet Baby

As far as lullabies go the classics are alright. You have your Rockabye Baby, Jesus Loves Claire, Twinkle Twinkle, your ABCs and your Grandpa Roger Had a Farm... but we also like some non-traditional songs quite often too.

When the rain is blowing in your face
And the whole world is on your case
I could offer you a warm embrace
To make you feel my love

When the evening shadows and the stars appear
And there is no one there to dry your tears
I could hold you for a million years
To make you feel my love

I know you haven't made your mind up yet
But I would never do you wrong
I've known it from the moment that we met
No doubt in my mind where you belong

I'd go hungry, I'd go black and blue
I'd go crawling down the avenue
There is nothing that I wouldn't do
To make you feel my love

The storm is ragin' on the rollin' sea
And on the highway of regret
The winds of change are blowin' wild and free
You ain't seen nothin' like me yet

I can make you happy, make your dreams come true
There is nothing that I would not do
Go to the ends of the earth for you
To make you feel my love

There is nothing that I wouldn't do
To make you feel my love

Back and Forth... Back and Forth

What a roller coaster.

To make this post simpler I am going to refer to our doctors so far as such: Dr. Mesa is the first surgeon we saw, who thought surgery was very likely; Dr. Dallas is the "expert" I have referred to that we will be seeing later in April; Dr. Phoenix is a doctor I have wanted to see who has been recommended to us by a few sources.

So here is a recap of the last few days. Tuesday I called Dr. Mesa's office, left a message, but did not hear back. Wednesday I called Dr. Mesa's office and left another message. His assistant called back and said she had talked to him but he had not been able to tell her anything because he was on his way to the OR and she didn't know when I would hear. In the meantime I called our insurance to see if I could get a second opinion. They said I could as long as it was a doctor in network. So I called Dr. Phoenix's office and lo and behold they could see us today (Thursday).

Later on Wednesday Dr. Mesa himself called. He said that he had consulted with the neurosurgeon he works with and they both agreed that Claire does not need surgery. He said they felt there was enough room in her skull so that we did not have to worry about her brain. BUT, he said that he wants to see her at the end of April with the neurosurgeon so they can get another look at her and be sure. They would also want to see her every 6 months until she is 3, and then every year until she is 5.

So far, every single step has turned out exactly the opposite of what we expected. The first time we saw Dr. Mesa we expected him to say she was a very mild case and didn't need anything. Then he said probably surgery. Then we sent the letter and tests to Dr. Dallas and fully expected him to agree and say she needed surgery. He said she probably didn't need surgery. Then we expected to hear back from Dr. Mesa to say he wanted to schedule surgery but he had changed his mind.

For our appointment today we expected to hear another vote for no surgery. Can you guess how it went? Two doctors came in, Dr. Phoenix and a woman. I don't know if she was resident or what. They started looking at her head and noting the abnormalities associated with her fused suture. He said she does not fall on either end of the spectrum; she is neither mild nor severe. He said that if there was a line for doing surgery that she is right on it, possibly just over it toward surgery. He kept kind of shaking his head and saying how borderline she is. I brought my list of a million questions and he patiently answered all of them. This post will drag on so I'll post them another time. He seemed knowledgeable, he answered our questions very well, and we definitely liked him. We certainly felt much better about Dr. Phoenix than we did about Dr. Mesa.

Dr. Phoenix said that because the case was so borderline we would have to make a decision about what we would like to do. He said that we could wait as long as we want to make the decision. I have usually heard that the surgery is best done before 10 months of age but he felt otherwise. He said that her head is unlikely to change much. He said that they like to see the forehead come out a little farther on the side so that there is not an indent above the brow bone. Hers is just a bit short due to the narrowing of her forehead. It's a bit hard for me to explain without showing.

Ultimately, according to Dr. Phoenix, we are in the dreaded gray area. He did not tell us what to do. It is our decision. We talked about the cons of not doing surgery. He said that her frontal lobe is being pinched by this condition. If there is a problem in a part of the brain that controls motor function, the effects would be obvious. It is not as straightforward with this part of the brain, which controls things like personality, decision making, self control, social behaviors, etc. There aren't as good of measures for this, especially in infancy. We discussed some medical journal articles I have found recently which talk about incidence of learning disabilities, developmental delays especially in speech, and behavioral disorders in children with metopic synostosis. These children experience these issues with greater frequency than "normal" children. And that scares us, obviously. These issues all "make sense" as the frontal lobe is involved in all of those functions.

We also brought up the opinion from Dr. Mesa that there is enough space. Dr. Phoenix said that "enough space" is not the issue. The way he explained it is that the fact that her forehead is as narrow as it is means that her brain is being restricted in that area and is growing in other areas, explaining the wideness at the back of her head.

So what do you do when a decision like this is left up to you? It's borderline, what do you do?

What if we see Dr. Dallas and he still thinks she does not need surgery? Honestly that is a major fear right now. Then what?

If Dr. Dallas says she is borderline or does need surgery then we will do it. If not, we can't answer that question right now. We really trusted Dr. Phoenix and he made us much more confident with the idea of having surgery locally if needed. But we certainly have not made that decision either.

The last thing I asked the doctors today is what they would do if Claire was their child. They both answered without hesitation that they would have the operation.