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!
Friday, April 22, 2011
Monday, April 18, 2011
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.
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.
Wednesday, April 13, 2011
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.
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.
Friday, April 8, 2011
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 18th. 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.
Saturday, April 2, 2011
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
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
Thursday, March 31, 2011
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.
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.
Thursday, March 24, 2011
We Got an Appointment!
First, apropos of nothing, I've been doing some hourly, contract work for my old company several hours a week. It's been a little from home, a little at the office, and it's been nice to use my brain in a sciency way and get out of the house once in a while.
Now, on to the important stuff. I had emailed the doctor in Dallas again with a couple more questions and I asked him if he would see Claire. He answered my questions and said he would be happy to take a look at her.
I also emailed two people in his office. One was to find out the cost of a consultation since I know our insurance won't cover it. I heard back from that person who told me the cost is $75!! Yay! I was totally expecting it to be at least a couple hundred dollars. I had also emailed the scheduling person to find out what kind of wait time there is to get in but that person never wrote back.
So yesterday I called the office. I talked to a very sweet lady who confirmed that the appointment will be $75 (but that they recently changed it and it used to be $300!) but told me they had no openings until June! Ugh, my heart sank. I don't know if she heard the disappointment in my voice or knew that June was after the boundary for the best time to do surgery (before age 10 months) but she told me she was going to talk to the scheduler and the doctor and get back to me. She didn't say anything about trying to squeeze us in but today she called back and offered an appointment on Good Friday, April 22nd.
Hooray! Now we can get this show on the road and talk to him in less than a month! I've been checking out airfare and hotels so I can get that all arranged. In the mean time we are still waiting to hear back from the local surgeon. Does anyone else think it is ridiculous that I have sent stuff to the expert guy twice and heard back from him twice and now scheduled an appointment without hearing from our own doctor once?! Ridiculous. We are just going to proceed as though we will follow the local surgeon's recommendation and hope that it will trigger a requirement of a second opinion because we would also like to talk to one of the other local surgeons. It would be nice if we could talk to both of the local doctors before going to Dallas but at this point that looks unrealistic.
Thanks for checking in, I will update again whenever I know anything else.
Now, on to the important stuff. I had emailed the doctor in Dallas again with a couple more questions and I asked him if he would see Claire. He answered my questions and said he would be happy to take a look at her.
I also emailed two people in his office. One was to find out the cost of a consultation since I know our insurance won't cover it. I heard back from that person who told me the cost is $75!! Yay! I was totally expecting it to be at least a couple hundred dollars. I had also emailed the scheduling person to find out what kind of wait time there is to get in but that person never wrote back.
So yesterday I called the office. I talked to a very sweet lady who confirmed that the appointment will be $75 (but that they recently changed it and it used to be $300!) but told me they had no openings until June! Ugh, my heart sank. I don't know if she heard the disappointment in my voice or knew that June was after the boundary for the best time to do surgery (before age 10 months) but she told me she was going to talk to the scheduler and the doctor and get back to me. She didn't say anything about trying to squeeze us in but today she called back and offered an appointment on Good Friday, April 22nd.
Hooray! Now we can get this show on the road and talk to him in less than a month! I've been checking out airfare and hotels so I can get that all arranged. In the mean time we are still waiting to hear back from the local surgeon. Does anyone else think it is ridiculous that I have sent stuff to the expert guy twice and heard back from him twice and now scheduled an appointment without hearing from our own doctor once?! Ridiculous. We are just going to proceed as though we will follow the local surgeon's recommendation and hope that it will trigger a requirement of a second opinion because we would also like to talk to one of the other local surgeons. It would be nice if we could talk to both of the local doctors before going to Dallas but at this point that looks unrealistic.
Thanks for checking in, I will update again whenever I know anything else.
Monday, March 21, 2011
Finally, An Email
I finally heard from the surgeon in Dallas
Dear Kyle and Jill:
I reviewed the pictures and CT you sent of Claire. Although looking at pictures is not the same as performing a physical examination, I am happy to share with you my impressions. I can see that your daughter has a fairly prominent metopic ridge, however, I do not see any obvious trigonocephaly. The metopic suture normally begins closing in the first year of life and can sometimes form a very prominent ridge. These ridges go away completely on their own, although it can take many years to do so. Looks like you have a pretty normal child to me. Once again, I hope you will understand that looking at pictures and a CT scan is not as good as performing a physical examination, and it is really the examination upon which I base the decision to operate (kids need to have more than very mild trigonocephaly for me to consider surgery). Please let me know if you have any other questions.
I wish we could say that we feel a deep sense of relief but it is not that easy. When we went to the first appointment with our local surgeon we fully expected him to tell us that Claire did not need surgery. We were both shocked and dismayed when he told us she probably did need surgery. After he explained what could happen if she did not have surgery we knew we wanted to do it, if it was necessary. And now we are faced with hearing an opinion that was not what we expected.
You might think that we were hoping to hear from the surgeon inDallas
So where do we go from here?
I called her local surgeon today to find out when we could expect to hear from him. The phone call did not inspire confidence, if I had any to begin with. The surgeon's assistant told me that she found Claire's file on his desk. He has the scan and the report. She said he had started to write some notes on it. The she said, "Honestly, I can't really read it. Something about her head and something about another doctor." Gee, that was helpful. Then came my favorite part when she said since her scan was on the 9th it seems her file "slipped through the cracks" so she put it on top of the pile. I know this is often how it goes with doctors and you always have to be vigilant and follow up, but still... She called back later to say that he is waiting to consult with the neurosurgeon who would be involved in the surgery but the neurosurgeon is out of the office since last week and they don't know when he gets back. So I will hear from them. Some day.
Our plan is to meet with the local surgeon and hear what he has to say. If he recommends surgery and goes to the insurance company to get approval I am hoping they will ask for a second opinion so we can see the other local surgeon, the one we have references for. This other local surgeon did a fellowship with the doctor inDallas
We are also seriously considering a trip toDallas Dallas
As always, we will let you know when we find out more.
Dear Kyle and Jill:
I reviewed the pictures and CT you sent of Claire. Although looking at pictures is not the same as performing a physical examination, I am happy to share with you my impressions. I can see that your daughter has a fairly prominent metopic ridge, however, I do not see any obvious trigonocephaly. The metopic suture normally begins closing in the first year of life and can sometimes form a very prominent ridge. These ridges go away completely on their own, although it can take many years to do so. Looks like you have a pretty normal child to me. Once again, I hope you will understand that looking at pictures and a CT scan is not as good as performing a physical examination, and it is really the examination upon which I base the decision to operate (kids need to have more than very mild trigonocephaly for me to consider surgery). Please let me know if you have any other questions.
I wish we could say that we feel a deep sense of relief but it is not that easy. When we went to the first appointment with our local surgeon we fully expected him to tell us that Claire did not need surgery. We were both shocked and dismayed when he told us she probably did need surgery. After he explained what could happen if she did not have surgery we knew we wanted to do it, if it was necessary. And now we are faced with hearing an opinion that was not what we expected.
You might think that we were hoping to hear from the surgeon in
So where do we go from here?
I called her local surgeon today to find out when we could expect to hear from him. The phone call did not inspire confidence, if I had any to begin with. The surgeon's assistant told me that she found Claire's file on his desk. He has the scan and the report. She said he had started to write some notes on it. The she said, "Honestly, I can't really read it. Something about her head and something about another doctor." Gee, that was helpful. Then came my favorite part when she said since her scan was on the 9th it seems her file "slipped through the cracks" so she put it on top of the pile. I know this is often how it goes with doctors and you always have to be vigilant and follow up, but still... She called back later to say that he is waiting to consult with the neurosurgeon who would be involved in the surgery but the neurosurgeon is out of the office since last week and they don't know when he gets back. So I will hear from them. Some day.
Our plan is to meet with the local surgeon and hear what he has to say. If he recommends surgery and goes to the insurance company to get approval I am hoping they will ask for a second opinion so we can see the other local surgeon, the one we have references for. This other local surgeon did a fellowship with the doctor in
We are also seriously considering a trip to
As always, we will let you know when we find out more.
Wednesday, March 16, 2011
Still Waiting
I've had quite a few people checking in about Claire. Unfortunately we are still just waiting. We haven't heard from our local surgeon or from the surgeon in Dallas after Claire's CT scan last Wednesday. I was really hoping to have heard from especially the guy in Dallas because I know some people have gotten very fast responses. But I guess I will just have to try to be patient!
I don't really have anything else new to update. Kyle's mom and dad are visiting for spring break so we are looking forward to Claire basking in adoration for the rest of the week!
In the meantime, while we all wait, I think we can all agree that a cute picture will make us all feel a lot better:
I don't really have anything else new to update. Kyle's mom and dad are visiting for spring break so we are looking forward to Claire basking in adoration for the rest of the week!
In the meantime, while we all wait, I think we can all agree that a cute picture will make us all feel a lot better:
Wednesday, March 9, 2011
CT Scan
Claire had her CT scan today. I was worried there would be a glitch with the insurance approval since we are still dealing with pre-existing condition requirements when she and I switched to Kyle's insurance after I lost my job. Luckily everything was approved when we got there. We wrote a check that took care of our whole deductible (yay?) and we were off.
The lady who performed the scan was telling us about how she would be strapped down, and she might cry, but it would be quick, etc etc. She went on and on about it as though we were going to freak out. Sure, I hate to see her cry but I knew it would be quick and I'm thinking big picture here. Seriously, she would not stop going on about it so finally I just said, "Yeah, this is the least of our concerns right now." She was very nice and I wasn't rude but really I just had to have her stop talking about it.
And scream she did, as I anticipated. She wanted no part of being made into a burrito and strapped down. But it was quick and then she calmed down right away. We got a disc of the scan and were on our way. When we got home Claire slept for three hours. I guess it was a bit of an ordeal for her.
I was really disappointed because other kids' CT scans I have seen are one lovely 3D image that clearly shows the sutures. Our scan was a series of single images of all different planes of her head. Looking at any one image doesn't mean anything to me so I guess I'll have to leave that to the experts. I planned to post it on here so I was bummed.
So the next step is that we wait for the images and report to be sent to our surgeon and then I assume they will contact us for a follow-up appointment. I absolutely hate waiting and the powerlessness associated with it.
I am also sending the images with a letter and some photos of Claire to a surgeon in Dallas, Texas. This doctor is pretty much the world's expert on craniosynostosis. He gives free consults by phone or email and will tell you what he would do whether you are going to choose him for the surgery or not. Pretty cool.
I am very interested in his opinion, but if Claire needs surgery I am also extremely interested in having him be the one to do it. There are tons of reasons why, which I will have to explain in another post. Suffice it to say that every fiber of my being (call it mother's intuition) is telling me to do everything in my power to make it happen. Unfortunately, it will be a fight to make it happen. There will be insurance and financial issues standing in the way but I am determined. There would surely be an insurance appeal to get his services covered. If she needs surgery, I at least have to try. So I'll be off to FedEx tomorrow morning to send him our scan results. And then more waiting to hear from him. Did I mention I hate waiting?
The lady who performed the scan was telling us about how she would be strapped down, and she might cry, but it would be quick, etc etc. She went on and on about it as though we were going to freak out. Sure, I hate to see her cry but I knew it would be quick and I'm thinking big picture here. Seriously, she would not stop going on about it so finally I just said, "Yeah, this is the least of our concerns right now." She was very nice and I wasn't rude but really I just had to have her stop talking about it.
And scream she did, as I anticipated. She wanted no part of being made into a burrito and strapped down. But it was quick and then she calmed down right away. We got a disc of the scan and were on our way. When we got home Claire slept for three hours. I guess it was a bit of an ordeal for her.
I was really disappointed because other kids' CT scans I have seen are one lovely 3D image that clearly shows the sutures. Our scan was a series of single images of all different planes of her head. Looking at any one image doesn't mean anything to me so I guess I'll have to leave that to the experts. I planned to post it on here so I was bummed.
So the next step is that we wait for the images and report to be sent to our surgeon and then I assume they will contact us for a follow-up appointment. I absolutely hate waiting and the powerlessness associated with it.
I am also sending the images with a letter and some photos of Claire to a surgeon in Dallas, Texas. This doctor is pretty much the world's expert on craniosynostosis. He gives free consults by phone or email and will tell you what he would do whether you are going to choose him for the surgery or not. Pretty cool.
I am very interested in his opinion, but if Claire needs surgery I am also extremely interested in having him be the one to do it. There are tons of reasons why, which I will have to explain in another post. Suffice it to say that every fiber of my being (call it mother's intuition) is telling me to do everything in my power to make it happen. Unfortunately, it will be a fight to make it happen. There will be insurance and financial issues standing in the way but I am determined. There would surely be an insurance appeal to get his services covered. If she needs surgery, I at least have to try. So I'll be off to FedEx tomorrow morning to send him our scan results. And then more waiting to hear from him. Did I mention I hate waiting?
Monday, March 7, 2011
CT Scheduled
I was thrilled to get the call this morning that I could schedule Claire's CT scan! We are set to go for Wednesday. I'm so glad I could get her in so fast. Let's get this show on the road!
Claire turned 8 months old yesterday! Here is a picture I took today for fun. I love a baby in overalls (and Vikings socks!):
Claire turned 8 months old yesterday! Here is a picture I took today for fun. I love a baby in overalls (and Vikings socks!):
Sunday, March 6, 2011
Q&A and Pictures
First, thank you all so much for your emails, blog comments, and facebook comments. It is so nice to know that there are so many people keeping Claire in their thoughts and prayers. This is one of those times that highlights how it is difficult for us to be so far away from "home".
There were a few questions and comments about craniosynostosis that came up a few times. One questions was "How common is this?". The most common cranio type involves the suture running down the middle of the back of the head, leading to an elongated and tall head shape. It occurs in about 1 out of 2,000 births. Another type involves the suture running down one side or the other. It affects about 1 out of every 2,500 births to 1 out of 3,500. I would say it is the most visually striking because the head will expand on the opposite side of the closed suture giving a very asymmetrical shape looking at the face. The metopic type that Claire has also affects 1 out of 2,500 to 3,500 births. A really rare type, thought to be about 1 in 50,000 births or less, affects the sutures low on the back of the skull.
Another question is whether we can connect with anyone else who has gone through this. A couple of our friends have mentioned that they know someone whose child has gone through this. I also found an online forum called Cranio Kids. It has been great for me! Parents from all over the world, as well as adults who have had the condition, get together on a message board to exchange stories, information, doctor and hospital recommendations, and of course support. It has been a great place for me to learn and "meet" people who know exactly what we are going through.
Before meeting with the surgeon we thought we would be in the clear because we read this on the website of a major craniofacial center:
"Many children may just have a ridge running down the center of their forehead suggesting that the metopic suture has closed early, however, without producing the triangular-shaped forehead. Only those children who have overt trigonocephaly need treatment. Children with an isolated ridge running down their foreheads do not require surgery."
We thought for sure that Claire would fall into that category, because to us her head looks mostly normal. I guess that is why we are not specialists and who knows exactly what "overt" means in this case anyway. But the same website also says this:
"Sometimes it can be very difficult to determine if a child has significant trigonocephaly, or not."
So, we will have to wait and see. That has been so hard. I hope to hear from the imaging center by the end of this week so we can get the appointment scheduled. There was a delay in getting a report from her doctor and if the insurance company requests the report it will set us back quite a while.
We have also been asked where the surgery will take place. This is an ongoing source of discussion and will require a post all its own. If we need surgery this will be a very big decision and will also depend on the other opinion(s) we get.
Finally, I'll post some pics of a typical, severe case of metopic and some pics we took of Claire's head in comparison.
Here is a typical picture of trigonocephaly that I stole from the internet:
At first I thought this picture showed a perfectly round head but the more I look at it I think I see the triangular shape. Obviously not as clear cut as the pictures above.
Here is a close-up of the ridge that has always been present, although I feel that it has become much more prominent, possibly a bad sign:
The ridge is surrounded by her stork-bite birthmark. I wonder if having the ridge contributed to those birthmarks (which are very common though). Also, can I just point out those beautiful blue eyes? At eight months old it seems that they might be here to stay. With Kyle and I both having brown hair and eyes I can say that I never pictured our baby this way! But I always wanted a blue-eyed baby!
Anyway, I could speculate about her head shape all day. And believe me, I do. The bottom line is that we won't know more until we have the CT and get another appointment with her surgeon. I just see this dragging on forever and it stinks.
There were a few questions and comments about craniosynostosis that came up a few times. One questions was "How common is this?". The most common cranio type involves the suture running down the middle of the back of the head, leading to an elongated and tall head shape. It occurs in about 1 out of 2,000 births. Another type involves the suture running down one side or the other. It affects about 1 out of every 2,500 births to 1 out of 3,500. I would say it is the most visually striking because the head will expand on the opposite side of the closed suture giving a very asymmetrical shape looking at the face. The metopic type that Claire has also affects 1 out of 2,500 to 3,500 births. A really rare type, thought to be about 1 in 50,000 births or less, affects the sutures low on the back of the skull.
Another question is whether we can connect with anyone else who has gone through this. A couple of our friends have mentioned that they know someone whose child has gone through this. I also found an online forum called Cranio Kids. It has been great for me! Parents from all over the world, as well as adults who have had the condition, get together on a message board to exchange stories, information, doctor and hospital recommendations, and of course support. It has been a great place for me to learn and "meet" people who know exactly what we are going through.
Before meeting with the surgeon we thought we would be in the clear because we read this on the website of a major craniofacial center:
"Many children may just have a ridge running down the center of their forehead suggesting that the metopic suture has closed early, however, without producing the triangular-shaped forehead. Only those children who have overt trigonocephaly need treatment. Children with an isolated ridge running down their foreheads do not require surgery."
We thought for sure that Claire would fall into that category, because to us her head looks mostly normal. I guess that is why we are not specialists and who knows exactly what "overt" means in this case anyway. But the same website also says this:
"Sometimes it can be very difficult to determine if a child has significant trigonocephaly, or not."
So, we will have to wait and see. That has been so hard. I hope to hear from the imaging center by the end of this week so we can get the appointment scheduled. There was a delay in getting a report from her doctor and if the insurance company requests the report it will set us back quite a while.
We have also been asked where the surgery will take place. This is an ongoing source of discussion and will require a post all its own. If we need surgery this will be a very big decision and will also depend on the other opinion(s) we get.
Finally, I'll post some pics of a typical, severe case of metopic and some pics we took of Claire's head in comparison.
Here is a typical picture of trigonocephaly that I stole from the internet:
Here is a picture of Claire from overhead:
Here is a close-up of the ridge that has always been present, although I feel that it has become much more prominent, possibly a bad sign:
Anyway, I could speculate about her head shape all day. And believe me, I do. The bottom line is that we won't know more until we have the CT and get another appointment with her surgeon. I just see this dragging on forever and it stinks.
Friday, March 4, 2011
Welcome and Claire's Diagnosis
Thank you for coming and learning about Claire's diagnosis. I think this will be the easiest way for people who are interested in what's going on with Claire to stay updated.
We had an appointment in mid-February for Claire to get a flu shot and discuss her continued dairy issues at her pediatrician's office. While there, her pediatrician noticed the vertical ridge on her forehead. The ridge is something Kyle and I had noticed since birth but not thought much about. The pediatrician said that she would like us to see a plastic surgeon about it and that it could have to do with the bones in her skull fusing prematurely. Honestly I planned to follow up on it but thought it was no big deal. Later that night we started to get worried and started googling.
By the time we were set to see the plastic surgeon we were pretty convinced that Claire had metopic craniosynostosis (said like: muh-TOP-ic CRANE-ee-oh-sin-oh-STOW-sis), but were also convinced it was very mild and would not need any attention other than possibly becoming a cosmetic issue for Claire down the road. The appointment was on February 28th and the surgeon confirmed that Claire has craniosynostosis.
He explained the condition, much of which we already knew thanks to our research. When you're born your skull is not one piece but is made of several bones. The bones are separate to allow for the rapid growth of the brain during infancy. The areas between the bones of the skull are known as sutures. The suture between the two front-most bones is called the metopic suture. The metopic suture normally closes between 3 and 9 months of age. Claire's metopic suture closed before she was born. No one knows why this happens but it could be due to her position in the womb. When a suture closes, the brain cannot grow properly in that area and the brain and skull compensate by growing abnormally in other areas. This causes an abnormal skull shape. It can also cause too much pressure on the brain which can lead to seizures, blindness, developmental delays, and other problems.
We do know that there is not elevated pressure in Claire's skull because her fontanelle (soft spot) is not bulging. We are also very happy that she has met all of her developmental milestones on time so this condition does not seem to have affected her development (yet).
When any other suture closes, or more than one is closed, surgery is always needed. But for the metopic suture it is more of a gray area. Some children just have a ridge like Claire's and their skull is really not otherwise affected. In that case surgery is not needed. We thought that this would be true for Claire. However, it can be difficult to determine the extent that the skull is affected. Kyle and I were actually quite surprised and sad to hear the surgeon tell us that he believes Claire will need surgery. He pointed out some features to us such as pinching at her temples, slight bulging above her ears, and slight widening of the back of her head. These characteristics are called trigonocephaly because of the triangular shape the forehead takes on. For many children there is a very pronounced triangular shape and their forehead looks like the bow of a boat from an overhead view. Claire's is not quite so noticeable. The doctor ordered a CT scan so that we can have a better idea of the effect on Claire's skull and brain.
We are currently waiting for approval from our insurance to have the CT scan. At that point we will know more about her prognosis. Because her craniosynostosis is the metopic type, we could have a difficult decision on our hands. If surgery is needed it will probably be before she is ten months old. That would be within the next two months. We plan to get at least one other opinion once we have the CT scan.
Right now our minds are going in a million different directions, we are scared, we are worried, and we just wish we knew what to expect. We are grateful that Claire is alright and we know that there are much worse diagnoses we could have received. However, the prospect of having her skull removed and reformed is more than just a little unsettling. We are looking forward to knowing for sure what we will do and moving forward. For now, my job search is on hold and I will remain unemployed until we can get this taken care of.
We will use this blog to keep people updated as to what we have learned and where we are headed with this. It doesn't seem likely but maybe in a few weeks I can just say, "We don't need surgery! Blogging done!" We'll see. Please feel free to leave any messages or questions in the comment section.
-Kyle, Jill, & Claire
P.S. If you want more information the wikipedia article for craniosynostosis is actually quite good.
We had an appointment in mid-February for Claire to get a flu shot and discuss her continued dairy issues at her pediatrician's office. While there, her pediatrician noticed the vertical ridge on her forehead. The ridge is something Kyle and I had noticed since birth but not thought much about. The pediatrician said that she would like us to see a plastic surgeon about it and that it could have to do with the bones in her skull fusing prematurely. Honestly I planned to follow up on it but thought it was no big deal. Later that night we started to get worried and started googling.
By the time we were set to see the plastic surgeon we were pretty convinced that Claire had metopic craniosynostosis (said like: muh-TOP-ic CRANE-ee-oh-sin-oh-STOW-sis), but were also convinced it was very mild and would not need any attention other than possibly becoming a cosmetic issue for Claire down the road. The appointment was on February 28th and the surgeon confirmed that Claire has craniosynostosis.
He explained the condition, much of which we already knew thanks to our research. When you're born your skull is not one piece but is made of several bones. The bones are separate to allow for the rapid growth of the brain during infancy. The areas between the bones of the skull are known as sutures. The suture between the two front-most bones is called the metopic suture. The metopic suture normally closes between 3 and 9 months of age. Claire's metopic suture closed before she was born. No one knows why this happens but it could be due to her position in the womb. When a suture closes, the brain cannot grow properly in that area and the brain and skull compensate by growing abnormally in other areas. This causes an abnormal skull shape. It can also cause too much pressure on the brain which can lead to seizures, blindness, developmental delays, and other problems.
We do know that there is not elevated pressure in Claire's skull because her fontanelle (soft spot) is not bulging. We are also very happy that she has met all of her developmental milestones on time so this condition does not seem to have affected her development (yet).
When any other suture closes, or more than one is closed, surgery is always needed. But for the metopic suture it is more of a gray area. Some children just have a ridge like Claire's and their skull is really not otherwise affected. In that case surgery is not needed. We thought that this would be true for Claire. However, it can be difficult to determine the extent that the skull is affected. Kyle and I were actually quite surprised and sad to hear the surgeon tell us that he believes Claire will need surgery. He pointed out some features to us such as pinching at her temples, slight bulging above her ears, and slight widening of the back of her head. These characteristics are called trigonocephaly because of the triangular shape the forehead takes on. For many children there is a very pronounced triangular shape and their forehead looks like the bow of a boat from an overhead view. Claire's is not quite so noticeable. The doctor ordered a CT scan so that we can have a better idea of the effect on Claire's skull and brain.
We are currently waiting for approval from our insurance to have the CT scan. At that point we will know more about her prognosis. Because her craniosynostosis is the metopic type, we could have a difficult decision on our hands. If surgery is needed it will probably be before she is ten months old. That would be within the next two months. We plan to get at least one other opinion once we have the CT scan.
Right now our minds are going in a million different directions, we are scared, we are worried, and we just wish we knew what to expect. We are grateful that Claire is alright and we know that there are much worse diagnoses we could have received. However, the prospect of having her skull removed and reformed is more than just a little unsettling. We are looking forward to knowing for sure what we will do and moving forward. For now, my job search is on hold and I will remain unemployed until we can get this taken care of.
We will use this blog to keep people updated as to what we have learned and where we are headed with this. It doesn't seem likely but maybe in a few weeks I can just say, "We don't need surgery! Blogging done!" We'll see. Please feel free to leave any messages or questions in the comment section.
-Kyle, Jill, & Claire
P.S. If you want more information the wikipedia article for craniosynostosis is actually quite good.
Subscribe to:
Posts (Atom)