Surgery Week

The countdown has begun... Four days from right now Ben will be all done with his surgery!

J.P., Ben and I will be leaving for Dallas on Monday afternoon. We will meet with Dr. Genecov on Tuesday morning. After that Ben will probably have some bloodwork done and we will do pre-admission at the hospital. We will also meet with the neurosurgeon, Dr. Weprin, on Tuesday afternoon. We should have a better idea of how everything will play out after these meetings.

Wednesday morning we will have to be at the hospital very early, probably about 5:30a.m. His surgery is scheduled for 7:30 and should last approximately 2 hours. I have no doubt that it will be the longest 2 hours of our lives! We will be able to get updates every half-hour, I think. Once he is all settled in the PICU we will be able to be with him the rest of the time. Both parents are allowed to stay in both the PICU and regular pediatric floor. Ben is expected to be in the PICU for the first night, and then moved to the pediatric floor at some point during the second day.

We are hoping to come home on Friday, assuming everything goes well. We are SO grateful that my sister, Lindsey, and her husband, Jim, are coming in from Kansas City to stay with Jack and Luke while we are in Dallas. Thank you Lindsey and Jim!!!

Ben and I will travel back to Dallas the following Monday for him to be scanned for his helmet. He will receive his helmet on March 18, and wear it for 3-6 months. Ben and I will then fly back to Dallas once a week to have it adjusted.

I have taken some "before" pictures of Ben's head, which I wanted to put on here for everyone to see.


Thank you again to everyone for your well-wishes and support. We are so blessed to have friends and family like you!!

Reassurance

It has been a week since we decided to schedule surgery with Dr. Genecov. The night I wrote the blog post about our decision I had butterflies in my stomach as I hit "Publish Post." I was so worried about whether or not we had made the right decision, and telling everyone made it feel so permanent- even more so than scheduling the surgery!

One week later, J.P. and I are both at peace with our decision. It is a decision no parent should have to make, but we feel we are doing what is best for Ben.

I wanted to share a message that I got from a mom whose son had "the big surgery." Her message made me feel so thankful that we had other options, and that we decided to do the limited CVR procedure. Here is what she said to me:

I believe whole heartedly in your decision and if this had been an option for my son I would have done it in a heartbeat. For days after his surgery I kept silently killing myself with the question of "how could I have done this to my baby?" Granted, now he is healed, but I do believe they remember pain. Also, one of the key points my doctor told us was that there was still a risk with the full CVR of having to go back and "tweak things" so to speak. GO BACK... Never. As for the scar that stretches from ear to ear, I was just talking to my husband the other night about it when I realized "what if he starts going prematurely bald?" I know that is a silly thing to worry about, but it's a worry none the less. I know this may make me sound like a horrible mom, but I will never do this to my baby again. I am glad that I was able to help him lead a more "normal" looking life, but seeing my baby helplessly in pain was just horrible. This is an honest reply about the procedure... I wish that the smaller procedure had even been an option. I remember when this whole thing started for us; I was thinking all we would have to do was helmet therapy, which was totally doable. Your little Ben is just
adorable! I love your blog and I will be following your story all the way
through!

Another conversation that made me feel so much better about our decision was with my Papa. I told him that I was concerned about whether we had made the right decision, and he told me that it was not about whether or not we made the "right" decision; it was that we were making the "best" decision. He told me to have confidence in our decision going forward. It's impossible for us to know today whether we are doing the "right" thing, but I know that we are doing what we believe is best for Ben.

We have received an overwhelming amount of support over the last week. Thank you for all of the wonderful words of encouragement and prayers. Keep them coming- the next 2 weeks are going to be the hardest!

Decision Time

After much thought, an overwhelming amount of research, and changing our mind a time or two, we have decided to have Dr. Genecov perform a limited CVR (Cranial Vault Reconstruction) procedure on Ben.

Here is the story of how we came to our decision:

After we got home from Dallas we needed some time to process all of the information. After sleeping on it, we both agreed that we were leaning towards Dr. Fearon, mainly because Craniosynostosis is his thing- he handles around 100 cases every year. He does the full CVR procedure (a.k.a. the "big surgery") because he believes it is the most effective and safest method. Thursday night we decided that we were ready to schedule Ben's surgery with Dr. Fearon. Well... J.P. began having second thoughts late that night, and his second thoughts made me reconsider as well.

I got back on the computer (where I have educated myself thoroughly about both options) and decided to look at the personal side of things- at people's blogs. I looked at pictures of people who had done "the big surgery." Looking at these pictures is heartbreaking- babies with heads swollen to twice their normal size and eyes swollen shut. I sat here crying and told myself I would do anything in the world to not make my baby go through that. I had been doing my best to look at it as a logical medical decision, but the fact remains, this is my baby. Ben is going to have to go through this.

While we recognize we will be dealing with strong emotions for some time to come, we're determined to make the best medical decision for Ben, independent of how his surgery will affect our emotions. J.P. convinced me that if we could get comfortable with both the risks and ultimate effectiveness of Dr. Genecov's less invasive procedure, then we should reconsider that option. If we believed his method offered a high probability of success and an acceptably low level of risk, comparable to Dr. Fearon's more invasive method, then the easier recovery and smaller scar for Ben would lead us to go with Dr. Genecov.

J.P. decided to send Dr. Genecov an e-mail expressing our concerns and asked a few questions. He immediately responded and said he would call us in 45 minutes to discuss everything in depth. We were able to ask better questions because we had processed all of the initial information.

It was a great conversation. Dr. Genecov explained that for many years he used a method more like that of Dr. Fearon's, but that he has come to believe that kids with Ben's specific diagnosis can be treated just as effectively in a less invasive way.

One of our biggest concerns about the endoscopic procedure was the limited view and concern about missing internal bleeding. Dr. Genecov explained that he does not use an endoscope for this reason- he has taken the endoscopic surgery and tweaked it to be able to do it through small incisions which allow for a wider view. I would be happy to explain in further detail to anyone who is interested.

So, after some more thought we decided that the potential pros outweigh the potential cons for the limited CVR. The selling point for us is the recovery is much easier for this procedure. We are willing to risk the chance of a second surgery (approximately 5%) in order to make it less painful for Ben. Another downside to this procedure is helmet therapy, which may require weekly trips to Dallas to have it adjusted. But, as I said before, I am willing to do anything I can to make this easier on Ben.

Ben is scheduled to have surgery with Dr. Genecov on March 3, 2010. We will have a full day or pre-op appointments the day before, including meetings with our pediatric neurosurgeon, Dr. Weprin, and cranio-facial surgeon, Dr. Genecov, who will work together during Ben's surgery.

I will update once we have a better idea of our itinerary for the week of Ben's surgery. In the meantime, please keep our family in your prayers. Thank you again for all of your support.

Dallas- Day 2

We are home from Dallas and our minds are overloaded with information about the treatment of Craniosynostosis.

Yesterday we met with Dr. Fearon. He has done a great deal of research on Craniosynostosis specifically. He is a very knowledgeable and personable man. He has a wonderful reputation among his former clients. He will even correspond through e-mail with anyone in the country about their child- at no charge.

Dr. Fearon is a strong believer in "the big surgery." He recommends that Ben have a Cranial Vault Reconstruction in May, before he turns 6 months old. This surgery requires a zig-zag incision from ear-to-ear. The bones would then be cut and taken out to be "remolded" into the proper shape. They would then be replaced using disolvable sutures (Dr. Fearon does not use any plates or screw). They would then sew Ben back up and he would have his head-shape corrected and any extra pressure on the brain would be eliminated. Ben would stay in PICU for one night and the regular pediatric floor for one night and then go home.

The Pros to this procedure are: full visibility/less risky (if there is any bleeding, the surgeons can see it and deal with it), automatic results (no helmet needed, all of the changes in shape occur during surgery), time-tested (Dr. Fearon does 100 of these surgeries each year, 50 just like Ben's), Dr. Fearon (he has far more experience that any other doctor in Dallas, and possibly the country, with Ben's condition), less likely to need a 2nd surgery. The cons are: harder recovery (lots of swelling and longer hospital stay), larger scar, seems to be much more invasive (taking skull apart and remolding it).

With all of that said, let me tell you a little bit about Dr. Fearon and how he does things. He recommends that patients take Procrit, a drug which will increase the red blood count, for 3 weeks before surgery. This decreases the chance of blood transfusion with very few risks. All of the risks he described to us only occur in adults- he has never had, or heard of, a bad side-effect with a child. He also uses a machine he calls the "cell saver" which sucks up the blood, filters it, and gives it back to the patient. This also reduces the risk of a blood transfusion. Dr. Fearon does not allow family blood to be used for transfusions, because of a risk (which I can't recall at the moment).

Needless to say, it is a lot of information to take in. It is not a decision that anybody wants to make: which way to cut your baby's head open. But, it is one that needs to be made, and pretty soon. We are definitely still undecided. There are obvious pros and cons to each route, and as Dr. Genecov said, there is no perfect way.

J.P. and I will be discussing all of this in the days to come and we will keep you all up-to-date on our decision.

This is a picture of Ben's X-Ray. You can see how long the back of his head seems to be. This is because the suture at the top of his head, where it is bright white, has closed. That is what this journey is all about- fixing Ben's big head!

(I taped the x-ray to a window, so you see me in the reflection and our neighbors house through his skull!)

Dallas- Day 1

We have begun our search for the perfect surgeon for Ben's Craniosynostosis.

Yesterday we met with Dr. Genecov. He is a craniofacial surgeon who does lots of cleft lip and palate treatment. Waiting in his office full of children with craniofacial abnormalities made J.P. and me both feel very fortunate that what we are dealing with will most likely be a one-time surgery with a scar hidden by Ben's beautiful hair.

Dr. Genecov recommended what he termed "limited CVR" surgery. This is not endoscopic, as I had been expecting. He said he would make 2 or 3 small incisions and remove a sliver of bone from Ben's sagittal area as well as a small piece on either side of his forehead. Ben would then need to wear a corrective helmet for 3-6 months. The pros to this approach are: less invasive, lower chance of blood transfusion (approx. 20%), shorter procedure (2 hours compared to possible 7), faster recovery (30 hours is average hospital stay) and smaller scar. The cons are: 5% chance of a second surgery, limited view of "the big picture" during operation and helmet therapy. Helmet therapy will most likely require Ben and me to travel to Dallas once a week to have his helmet adjusted- for a possible 6 months. There may be a place in OKC that can do the adjustments, but again, we want the very best people working on Ben's helmet so we don't need a second surgery.

After meeting with Dr. Genecov we met with a developmental specialist, Dr. Sperry. She seemed to think Ben was right on track with his development and that there are not too many developmental delays associated with Sagittal Synostosis, assuming he doesn't have any syndromes associated with it- which we don't believe he does. She said his gross motor skills may be delayed because of his big ole head, but once we have the surgery he should catch up quickly. She said the only thing to look for will be visual processing once he begins to read- and that can be treated easily if we catch it early.

We then went over for Ben's pictures to be taken and thorough measurements of his head taken. The anthropologist took about 100 different measurements of Ben's head- literally! Ben was a trooper through all of this, especially since it was mostly during nap time. He truly is the best baby in the world!

It was a long day, and a lot to process. I had a bit of retail therapy last night at the Galleria while J.P. studied for his CFA level 2 exam.

After my persistence with Dr. Fearon's scheduler, I was able to get us in to see him today. She went out of her way to try to fit us in while we are here in Dallas, and I am so grateful! After our appointment at 1, we will have all of the information we need (hopefully) to make a decision and get a surgery scheduled. I have never read a bad word about Dr. Fearon, so I have a feeling we are going to have a very hard decision to make.

Thank you to my mom and Patty for taking care of Jack and Luke while we are here in Dallas. We would be so lost on this journey without the help from our friends and family! I will update after we get home about our meeting with Dr. Fearon.

Appointments Scheduled

J.P., Ben and I will be traveling to Dallas on Monday to meet with Dr. Genecov on Tuesday.

An initial consultation is much more involved than I would have imagined. We will first meet with Dr. Genecov. He will examine Ben's head, X-rays and CT scans. He will also explain his process to us as well as answer any of our questions.

Dr. Genecov also works with a speech pathologist who will do a developmental evaluation of Ben. We will also take Ben to get pictures of his head taken from all angles.

We will then meet with an anthropologist who will take very specific measurements of Ben's head. I have heard that the children hate this process. Hopefully Ben is small enough that he won't be too scared. The anthropologist takes measurements pre-op and post-op in order to see how the head has changed. The doctors then use this information to further their research and continue to improve the way they do the surgery. Both doctors we are seeing in Dallas use the same anthropologist.

We have an appointment with Dr. Fearon scheduled for February 26. His scheduler is trying to fit us in this Tuesday or Wednesday if possible. We would really love to meet with both doctors soon so we can make a decision about which route to take: endoscopic or "the big surgery."

I will update again after our meeting on Tuesday. Thank you all for your wonderful messages of support. We are so blessed to have such wonderful friends and family.

Chapter One

Ben's head first caused us concern during my 32 week ultrasound. Ben's head measured very large at that time, so my OB, Dr. Larson, referred us to a specialist for a very high resolution ultrasound. We went to Dr. Stewart when I was 36 weeks pregnant. Everything looked good on the ultrasound, just a big baby with a big brain, according to him. When Ben was born his head measured off-the-charts large, so a CT scan and thorough chromosome screening were ordered. Everything came back completely normal. We thought we were in the clear with a very smart little baby!

At Ben's 1 month checkup Dr. Daley told us he was concerned about the shape of Ben's head- very thin and long. He said Ben's sutures might have closed up pre-maturely, but we would give it another month to see if it would get any rounder. I began to do a little bit of research on the topic at this time, which helped to prepare me for the diagnosis. At Ben's 2 month checkup Dr. Daley ordered an X-ray and called that night to confirm that indeed, Ben's Sagittal suture was closed.

Ben was diagnosed with Sagittal Synostosis on January 28, 2009. He will most likely need to undergo surgery on his skull to correct the condition. The prognosis for Ben's condition is very positive- most kids are completely normal after the surgery.

Here is Craniosynostosis in a nut shell:

The skull of an infant is made up of free-floating bones separated by fibers called sutures. This arrangement allows the infant's head to pass through the birth canal and also enables the skull to grow with the brain in early infancy. Premature fusing of the sutures is called Craniosynostosis, which restricts skull growth. The cause of this premature fusion is unknown.

There are two methods to the repair. The first is a traditional procedure in which an incision is made across the head from ear to ear. The neurosurgeon cuts the fused bone and then removes the parts of the skull that are deformed and remolds them before replacing them. The procedure is invasive, and the chance of a blood transfusion is relatively high. As the child grows older, the cosmetics are evaluated to determine if a second surgery is required. The chances of this are relatively low. The ideal time for this procedure is between 4-10 months old.

The second method is an endoscopic procedure. Two small incisions are made on top of the head. The procedure is less invasive, and the chance of a blood transfusion is significantly lower. The child is then required to wear a corrective helmet, for up to a year, to help shape the head. Should the helmet not achieve satisfactory results, a second surgery might be possible. The possibilities of multiple surgeries is greater in this method. This procedure is usually done prior to 3 months old.

J.P. and I are planning to meet with surgeons who perform both methods to decide what is best for Ben. We have a meeting scheduled with Dr. Fearon on February 26 in Dallas (hopefully sooner if they have a cancellation). Dr. Fearon is very well known in the world of Craniosynostosis. He performs the regular surgery, but has revolutionized the procedure. To read more about him and his philosophy go here. We are also hoping to meet with Dr. Genecov, who is an expert on the endoscopic procedure. I left a message with his office today about scheduling an appointment. I have read wonderful things about him and his procedure as well. Dr. Daley has also put us in contact with a pediatric neurosurgeon in Oklahoma City who treats Craniosynostosis. There are no doctors in Tulsa who perform these procedures.

We are trying to educate ourselves as much as possible on this condition. I have found it very helpful to read about other people's journeys with Craniosynostosis from diagnosis through post-operation on http://www.craniokids.org/ . It is a wonderful, supportive community where you can get questions answered by parents who have lived through this.

Right now we are just thanking God for blessing us with three wonderful boys who are all very healthy, even Ben. We are so lucky to have such wonderful, large families who we know will support us through this.

I plan to post updates here throughout our journey.