Monday, August 31, 2009

Pre-op and Surgery Schedule

We just got more information from Dr. Fearon's office including the schedule below:


September 15 09:30 a.m. Registration-Specialty Center

10:00 a.m. Dr. John Kolar-Anthropologist

10:30 a.m. Preop Testing and Education

11:00 a.m. Media-Photography

12:30 p.m. Dr. David Sacco-Neurosurgeon

04:20 p.m. Dr. Jeffrey Fearon-Surgeon


September 16 10:30 a.m. Please proceed to Building D, 6th Floor (Pediatric Day Surgery), for check-in. Please call 972-566-4190 if you need assistance in locating the unit.

12:30 p.m. Surgery with Dr. Fearon and Dr. Sacco

Mason is not suppose to have anything to eat or drink after 6:30 the morning of the surgery...I can't imagine how that is going to work since his surgery is not until 12:30! Tuesday is going to be a long and tiring day, and Wednesday will probably be the hardest day of my life...but I know we'll get through it.

We got his Hematocrit back, and he was at 40 before the first injection. They want him at 45 before the surgery.

Thursday, August 27, 2009

First injection

Today was Mason's first shot ever. Yesterday I picked up his very expensive Procrit from the pharmacy ($100 copay!), and today he got his first injection. Aaron held him, and he only cried for a minute. Luckily it's a subcutaneous injection instead of in the muscle. His nurse Ramona did it very quickly. As soon as we were in the car he was smiling and back to his normal self. It went as well as it could. The hardest part of the morning was the lab work. The doctor ordered just a hematocrit finger prick, which didn't sound so bad...better, I thought, than the full-on tourniquet/vein draw. It was horrible. First of all it's really more of a cut than a poke, and she had to hold his thumb tight while she collected 3 little vials of blood, Mason screaming the whole time. And then his thumb would just not quit bleeding, so she had to hold cotton ball after cotton ball for maybe 10 minutes. At this point I know it didn't hurt anymore, but it was really scary to him that this strange lady would not let go of his hand. I nursed him while she was trying to get the bleeding to stop, and it calmed him down (which probably helped with the bleeding), though he definitely kept his eyes on her. Poor little guy. He fell asleep in the car on the way home after all that excitement. One down, two or three more to go. The next two weeks we do the hematocrit first, to see if he needs an additional injection of Procrit.

Thanks Katherine for the text! We saw it in the waiting room before Mason's appointment and it helped me relax a little!

Tuesday, August 25, 2009

It becomes very real

One of the (many) reasons we chose Dr. Fearon in Dallas is that he does everything possible to maximize safety and lower risks during his operations. One of the ways he does this is by prescribing pre-surgery Procrit injections. Procrit is a drug that increases the red blood cell count in the body, thus decreasing the chance that Mason will need a blood transfusion. The biggest risk of this surgery (and it is a very serious risk) is blood loss. He is to have 3 injections (maybe 2 if his count is high enough before the third), once a week the three weeks before his surgery. I've heard from other mom's that the hardest part is the blood draw, and they have to do this before each injection to check his hematocrit. Some even say that this was one of the hardest parts of the whole experience. Well, his first one is this Thursday, just two days away, and I find myself really dreading it. Hopefully it will go better than expected. I imagine it will all become much more real after this.

Thursday, August 20, 2009


For the past week Mason has been really pulling on his ears and grabbing/pulling at the back of his head (right where his fused suture is). He has done this off and on for the last few months, but it seems to have really increased this last week. He definitely does not have an ear infection, and there is no sign of new teeth coming in. His sleeping is completely disrupted, as he wakes up fussing every hour or so. Of course, there is no way of knowing for sure that he is having headaches, and if so, if they are related to his cranio, and I realize that it could be any number of things, but it's hard not to wonder if the two are connected. His doctors tell us that though older kids with untreated cranio sometimes complain of headaches, there is no evidence that it is a common problem with babies. His nurse Cindy thinks that diminished blood flow at fused sutures might cause some strange nerve sensations, and that this could be bothering him...but it is all speculation since he can't tell us exactly what he's feeling. It's so hard to see him uncomfortable!

Wednesday, August 19, 2009

What caused Mason's cranio?

The following discussion is taken from Dr. Fearon's website. I found it extremely helpful in understanding why this might have happened to Mason J.

"What causes sutures to fuse shut before they are supposed to? The two most common causes for premature closure of a suture are either a change in one of the child’s genes, or from outside pressure on the skull. When only one single suture is fused shut, the most common cause is probably “environmental” (or from outside pressure on the skull). We know that it is possible to cause craniosynostosis in animals by restricting skull growth while the animal is still in the womb, and it is very likely that this is the primary cause for the majority of the single sutural synostoses in babies. The uterus, or womb, is a relatively small space. We know that sometimes babies can end up in certain positions in the uterus where they cannot move around freely (for example, the breech position). We suspect that children born with a single sutural synostosis may have been positioned in the uterus so that there is pressure on a part of the skull. If the skull gets caught in a tight place in the uterus, this pressure can restrict the ability of the skull bones to be stretched apart by the growing brain. If the suture is not stretched apart, it “thinks” it’s job is done and it fuses shut with normal bone. Abnormal skull shapes and single sutural synostoses are more commonly seen in twins than in single births, further supporting this theory of in-utero constraint. Craniosynostosis is also more common in boys than girls leading some researchers to speculate that testosterone might make suture closure more likely if there is any restriction of skull growth inside the uterus. Mothers who have delivered babies with single sutural synostosis should not feel guilty that they did anything wrong during their pregnancy to cause this condition. Craniosynostosis occurs in spite of the mother doing everything “right.”

Usually, when children with a single sutural craniosynostosis gow up, they do not pass this trait on to their children. However, it has been reported (and we have seen cases of this, as well) of a single sutural synostosis being passed from generation to generation. This hereditary pattern suggests that the single sutural synostosis is caused by a problem with a gene allowing this trait to be passed from one family member to the next. It is possible to test for some of these genes to see if they are present in children with craniosynostosis (which is something that we are currently doing in Dallas). However, it should be remembered that the overwhelming majority of single sutural synostoses appear to be the product of two parents with normal genes, and a mother who has normal prenatal care. Should children born with a single sutural synostosis decide to have children of their own in adulthood, the chance of passing on the condition is estimated to be less than 2%. If a couple has a child who is born with a single sutural synostosis, the chance of this couple having a another child with a single sutural synostosis is also thought to be about 2%."

Head shots

When I tell people about Mason's surgery, they often look at him and say "I think he looks fine, why would you do surgery?" It's true, he looks like the healthy, beautiful boy that he is, but here are a few photos to help you understand what we're talking about. It's easiest to see his head shape with wet hair, from a bird's eye view. Here are a few wet head photos taken recently that show the forehead and occipital bossing, as well as the elongated shape. One things for sure, he sure is one good-looking kid, funny noggin and all!

Thursday, August 13, 2009

Our Story

Welcome to Mason J's cranio blog. We're starting this to keep our friends and family updated on what is happening through this whole process (as well as to divert some of mama's energy away from constantly worrying). It's mid-August now, and I can't believe our little guy is already one year old! In a little over a month Mason will most likely be undergoing major skull surgery to correct his sagittal craniosynostosis. I say most likely because I'm still having trouble believing that it's actually happening, still having trouble completely deciding to do it, and still hanging on to the the hope that when we get to Dallas that Dr. Fearon will tell us that Mason does not need surgery after all. I'm getting way ahead of myself... For the purpose of this blog I should probably start with a little explanation about all of this. Sorry but this first post will probably be long.

Most of you know a little or a lot about Mason's birth could be a whole blog to itself. As that is not my purpose here, I'll be brief. Mason was born on August 6th, 2008 by Cesarean section after a long labor and many hours of pushing. I pushed and pushed in every way possible (I'll spare the details here) and he just would not budge. He was posterior in position, with the cord around his neck, and as we were soon to learn, his head could not mold properly due to a premature fusion of one of his cranial sutures. His head was a little pointy at the crown, but it was assumed this was normal and due to birth and nothing else was mentioned about it. He was a strong, beautiful, healthy baby boy, and he grew (and continues to grow) wonderfully. At his first well-baby check-up the doctor noticed that is anterior fontanel (soft spot) was closing a little too quickly. He said it was nothing to worry too much about at this point, but that we should keep an eye on it and regularly check his head circumference. He also mentioned that sometimes when this happens surgery is necessary to allow room for the brain to grow.

Being the mom that I am, I went straight home and began researching premature closing soft spots and what it meant. I kept coming across craniosynostosis and wondering if this is what Mason had. I could definitely see a resemblance in head shape when I looked at Mason's head and the pictures I found on line of other kids with cranio. Even so, Mason's head was not nearly as severe in shape as most of the photos I came across. I could also feel a bony ridge along Mason's sagittal suture, another indicator (besides fontanel closure and abnormal head shape) that this suture was closed before it was time. I called our doctor to get a referral to a specialist at the Children's Hospital in Denver.

A couple of weeks later we headed up to Denver for Mason's appointment. I had no idea what to expect, and was scared that we'd immediately need to do surgery. All of my research seemed to suggest that surgery was almost always the best option for kids with sagittal cranio (or scaphocephaly). We saw a very nice nurse practitioner in Denver, who is supposedly an expert at diagnosing craniosynostosis. I could tell that she is use to seeing much more severe cases, because at first she didn't think anything was wrong with Mason, though she admitted that his head shape was "on the cusp" of normal, with a small amount of forehead bossing (when the forehead sticks out a little). I pointed out the ridge along the suture, and she decided to send us down for an xray. The xray confirmed my mama intuition, that the back portion of Mason's sagittal suture was prematurely fused. (See the picture on the side). She called in a neurosurgeon to do a consult, and they both agreed that though the bones were fused, Mason's case was very mild and no surgery was recommended at that time. They also said that it was a cosmetic issue, and whether or not to do surgery would be our choice.

We went home relieved that for now at least we'd dodged the surgery bullet, but I was still concerned about what this meant for Mason now and in the future. I put it out of my mind for a while, but I still looked at his head all the time, wondering if he would need surgery one day. A few months later my intuition kicked in again, and I began doing more research. His head still looked good to us. It was growing in the characteristic football shape of scaphocephaly, but it was still mild compared to others, and well masked my his hair. His development was (and still is) right on track. As I researched I came upon quite a bit of evidence which disagreed with what the docs in Denver told us. It seemed that in many cases cranio was much more than "just cosmetic", and that often kids had dangerously raised intercranial pressure (ICP) which could lead to headaches, seizures, developmental delays and other cognitive problems. It makes sense that if the brain is not able to grown in the shape it was meant to, that problems could arise. I found a wonderful online forum, Cranio Kids, where I met and talked with other parents of kids with various types of cranio.

That is where I learned about Dr. Fearon (click his name to take you to his website where you can learn more about him, the center, and the condition that Mason has). He is a very well-known, very experienced craniofacial surgeon, who specialized in cases like Mason's. I emailed his some photos of Mason, and we did a phone consultation with him. (He does this free of charge, and also is willing to answer any questions we have, even if we don't end up using him.) Everything that I've heard about him is wonderful, from his level of expertise, to his loving bedside manner, and that was only confirmed in talking with him. He believes that Mason does need treatment. Given all that we know about brain growth, brain metabolism and blood flow, there are risks that not doing this surgery for Mason may cause problems later down the road. Of course the surgery has it's own risks, and this is not a decision we are making lightly.

If fact, I'm terrified of putting my baby boy through this. It has been and continues to be the hardest decision I've ever had to make. He looks so perfect and beautiful to me, but lately I'm pretty sure he's been having headaches. We could wait and see for another couple of years, but then doing the surgery later is a little more complicated because of the continued growth of the skull. From what I can tell on the craniokids forum, these babies do really well through surgery and recover very fact, in some ways it seems harder on the parents than the kids. I'll write another post explaining exactly what will happen during the surgery and how long we're likely to be in the hospital.

So where are we now? Though I question our decision daily, we are heading to Dallas mid-September to have a consultation with Dr. Fearon. After that, if we believe that surgery is the best option for Mason, it is scheduled to happen on Wednesday the 16th. I will be posting regular updates on this site to keep everyone informed. OK, that's probably a long enough post for now. More info to come. Thanks for reading and for keeping us in your thoughts and prayers!