Thursday, August 26, 2010

Another Appointment

Now that we have a surgery date set, I have been re-thinking and second-guessing our decision a little bit. This is mostly because I have been watching Addy ever since her diagnosis and seeing that the asymmetry of her head is getting a little worse (which is to be expected, since the head may not want to grow correctly, but the brain keeps getting bigger regardless!). And also, more significantly, I have been noticing that she is not quite as happy and content a baby as she once was. I wonder whether she is suffering from headaches, which is not as likely for a baby with only one fused suture, but is still possible. I have joined an online forum of parents (mostly moms) whose children have craniosynostosis, and a few of them have said they believed their children had the same thing. Some said their babies' moods were much more mellow or even completely different after the surgery was done!

So because of this, we decided to try to get her CT scan done a bit earlier than the surgeons were originally planning. Normally, they do it very close to the surgery date, just so they can get an up-to-date road map for the surgery, so to speak. However, it is not completely necessary to wait that long, and I will feel a lot better if we can determine that it will not be dangerous or miserable for Addy to wait until November for her surgery. I have it on good authority that if for some reason the CT shows that her brain is under pressure (causing the headaches) or something else to show that she needs surgery earlier, they will make it a priority to get Addy in as soon as she needs. Her doctor normally likes to do these surgeries when the baby is around 7 months old, but we will see if that is best for Addy or not. Our CT scan and then appointment with Dr. M are scheduled for Sept. 16, three weeks from today.

We would appreciate prayers for this appointment. We want the CT reading to be as good / accurate as possible, so Addy will need to be very still -- either asleep or under some mild anesthesia. Natural sleep would obviously be preferred, but please be praying that God would allow whatever is best to get a good scan. Please also pray for our appointment with the doctor -- that we would be able to get our questions answered and determine whether the date in November will be the best date for her surgery.

On another note, I have been finding some great advice and encouragement from the moms on the online forum mentioned above! It is really nice to be able to talk with other moms who have dealt with the same things that we are going through, and to receive help from them about what to expect, what to watch for, questions to ask, etc.

Oh, and by the way... I don't remember if I mentioned this before, but Addy also has a bit of a head tilt, and her left eye drifts a little bit to the outside and down from the other eye. I used to think the head tilt was just because the left side of her head is bigger (and thus heavier), and it might just be the weight of it that is causing her to tilt her head. Several of the moms mentioned that their children had the same issue, though, and in some cases it seemed possible that it wasn't really related to the craniosynostosis (although some of the moms did specifically say that it got better after the surgery). Several of them also mentioned eye problems, which could very well be related to the head tilt... I have heard both that the head tilt can cause the eyes to set themselves differently so the baby can see clearly, and vice versa -- that the eyes can be misaligned and cause the baby to tilt his/her head to level out the eyes. I am not sure that either of these is the case for Addy, but I do suspect that the two are somewhat related. I have heard that giving her more tummy time can at least help the neck issue, and since I have been encouraging that, both the head tilt and the eye issue seem to have improved a little.

In any case, please be praying that we can figure out what is causing both these issues and get them resolved.

Thanks to everyone for all your prayers and support!!!

Saturday, August 21, 2010

Surgery Date... scheduled for November 12. Other details to follow in the coming weeks.

Thursday, August 12, 2010


Just in case anyone is wondering, I have still not heard when the surgery date will be. The woman who schedules these things did not contact me by the end of last week, and I didn't know until I called yesterday that she is apparently on vacation all this week. :-p So hopefully I will know sometime early next week. If they don't call me, you can bet I will be calling them. ;-)

Wednesday, August 4, 2010

Choosing the Open Procedure

Update, short version: We have decided to abandon the endoscopic option and have the traditional open surgery for Addy. The operation will be at Duke hospital, most likely sometime in November. We should be receiving dates for the surgery and pre-op appointments by the end of this week.

And now for the long version...

We went to Duke for a consultation with Dr. M (the pediatric plastic surgeon) this past Thursday. We also had a short talk with Dr. G, the pediatric neurosurgeon with whom Dr. M performs these surgeries. Dr. M examined Addy and looked at her x-rays to confirm the diagnosis of craniosynostosis -- which he did, to no surprise. He then took some time to explain to us a little more about craniosynostosis, what the traditional surgery is like, and how it compares to the endoscopic procedure. To our surprise, he was relatively familiar with the doctors in San Antonio whom we were considering (Dr. G had actually worked in the same hospital with them for a time), and his review of them was not altogether negative. In fact, he said that if Addy's case had been a saggital synostosis (down the middle of the head), he might have actually encouraged us to go the endoscopic route. He said he was almost convinced that he should start using this method himself. For coronal synostosis like Addy's, however, he still believes that the traditional method provides the best results.

Here are the main differences between the procedures. The endoscopic surgeon makes two incisions -- one in the middle of the head and one near the ear, for Addy's case -- of about 1.5 to 2 inches in length. They then remove a small piece of the bone along the place where the two plates have fused together, to release the fused point. Afterwards, they use a specially fitted helmet to encourage the head to grow in the right shape. This helmet must be worn 23 hours a day for approximately 12 to 18 months, with refittings approximately every 3 months.

In the traditional procedure, the neurosurgeon makes an incision from ear to ear (zig-zagged to make the scar less noticeable under the hair). They then actually remove the bones and hand them over to the plastic surgeon, who molds the bones into a more normal shape. Then they replace the bones and fill the gaps with dissolving screws and other materials to help keep the bones in place. A more symmetrical result will be noticeable immediately, and no helmet is required after surgery.

The biggest disadvantages that we could think of to the open procedure were having to wait to get the procedure done, length of surgery time (and time under anesthesia), common need for blood transfusion (because of blood lost during the surgery), length of stay in hospital, limitations on sports activity in the future (something new that came to my attention last week), and the general invasiveness of the procedure. Dr. M answered our questions as follows.

Having to wait: The open procedure is usually done between 6 and 8 months, while the endoscopic procedure essentially needs to be done ASAP, and definitely before 6 months. Part of the reason we liked the endoscopic option is because we were afraid that waiting that extra 3 months might be damaging to Addy's health. Dr. M explained, however, that even if we never had the surgery, it's very likely that Addy would be completely normal and healthy, albeit with a misshaped head. The growth of the brain is what determines the head shape, and if the growth is cut off in one direction by a closed suture, the brain simply continues to grow in whatever direction it can. In some cases (especially if more than one suture is closed), this can cause increased pressure in the brain, which can lead to headaches and even brain damage. However, Dr. M said that this only happens in about 10-15% of cases. So, unless he has reason to believe that Addy is suffering from one of these cases (which he did not say he did), it should not be harmful to Addy's health to wait the extra time.

Surgery time: The surgery time for the endoscopic procedure is normally about an hour in length, whereas the open surgery will typically take about 3-4 hours. While this does mean longer time under anesthesia, in the scheme of things, this really isn't that much longer. Or, as Dr. M put it, "it's not nearly as long as some of the other surgeries that we do here." There is always a risk under anesthesia, but Dr. M assured us that the anesthesiologists would keep a close eye on Addy and make sure that she is handling it all right.

Blood transfusion: First of all, Jeremy or I can donate blood specifically for Addy's surgery, to have on hand in case she needs it. Secondly, while this procedure does have a high rate of transfusions, this is not necessarily a bad thing. As Dr. M explained it, someone who is trying to advertise a low transfusion rate (such as the folks in San Antonio) may be inclined to push the limits a little further than necessary, just to keep their rates down. Not that they would push it to an unsafe level, but they might let it drop a little lower, instead of going ahead with the transfusion to try to make the baby feel better and more comfortable after the surgery. Dr. M told us that they will normally put a line in the baby and make the transfusion slowly over the process of the surgery, unless the baby is just doing great (with very minor bleeding) and looking like he/she doesn't need a transfusion at all. So while the amount of blood lost sounds scary, the transfusion process is safe and helps the baby feel more comfortable.

Length of stay in hospital: The typical stay after Duke's procedure is about 4 days, versus 1-2 days with the endoscopic team. While this will make the total more expensive, the cost to us will be no different, since we figure we will be paying up to the out-of-pocket limit on our insurance for either surgery. And while it won't be fun to stay in the hospital for that long, we would have spent at least that much time away from home and our other girls anyway, since we'd have to fly away to San Antonio. This way, we can at least make easy trips back home if we need to.

Sports activity: I had heard from another mom who chose the endoscopic procedure that, unlike children who had the open procedure, her child had no limitations for sports. Dr. M, however, said that an child who has had an operation such as this will want to avoid rough sports to avoid trauma to the head. He said that this is usually not as much of a problem for girls, since they are not usually going to want to play football or rugby. He did say that they are a little uncomfortable with soccer (which is one sport I would consider letting my children play), but it is not completely out of the question.

General invasiveness: When it comes right down to it, I think the main reason I was rooting for the endoscopic option was simply because I, as a mother, get pretty squeamish when I hear what is necessary for the open procedure. The thought of my baby's head essentially being taken to pieces and put back together, and of having her come out of surgery bandaged and bruised almost beyond recognition, is NOT something that makes me comfortable in the slightest. After talking with Dr. M, however, I have confidence that these are experienced surgeons who have performed this surgery many times. They know what they are doing, and they have had great success and few complications in doing it. Dr. M himself has been performing these surgeries for at least 8 years, not including his time in medical school, with about 30-35 cases a year. In all that time, he listed only a handful of complications, with the probably worst of them being an infected incision which required reopening and cleaning out. In other words, complications are very rare.

As I mentioned above, Dr. M seemed pretty familiar with the folks in San Antonio, and as he put it, if he thought that their method was really the best, he would already be doing it. Contrary to what I had assumed before our talk, the endoscopic method has been around for a fair amount of time as far as the medical world is concerned (about 10 years), and it is still not very well received by doctors around the country. Jeremy's cousin's wife, who is a doctor at Washington's Children's Hospital in Seattle (which is apparently one of the best places in the country for treating craniosynostosis), gave us some information from one of their neurodevelopmental pediatricians who has a number of patients with the condition. This doctor, like the doctors at Duke, felt that the open procedure was the best option.

Dr. G, who had worked near the doctors who perform the endoscopic surgery in San Antonio, provided a helpful perspective as well. Although he had good things to say about these doctors, he said that he would still recommend the open procedure, especially for unicoronal synostosis (i.e., fusion of a single coronal suture, from the middle of the head to the ear on one side, as Addy's is). Unlike the other forms of craniosynostosis, this is the only form that causes an asymmetrical misshaping of the head, whereas other forms will cause an abnormal but symmetrical shape. This makes it more difficult to achieve an aesthetically pleasing result, since we like to see symmetry on both sides of the head. For this reason, the open procedure will generally work better, because they are able to actually shape the bone, instead of using a helmet to hopefully help the bone to grow in the right shape. If for some reason the helmet didn't work, the child might need the open procedure down the road anyway, which would be far worse because the child would be older, more mobile, more aware of what was happening, and have harder (less malleable) bones.

Of course, as far as we could tell, this second surgery would not be entirely necessary (i.e., it would not be a threat to her health not to have it) -- it would just be needed to achieve a more aesthetically pleasing result. While this would make a difference, especially to a girl, it is not crucial, and did not factor largely into our decision. Essentially, what it came down to was the feeling that we were debating between two surgeries of approximately equal value -- one slightly more risky, but still very safe and effective. If one had presented itself as significantly superior to the other, we would have gone with it. But in the absence of a clear-cut winner, we had to factor in the elements of cost and convenience. And with the necessity of plane trips to and from San Antonio several times in the next few years, PLUS the inconvenience of having to make Addy wear a helmet for a year or more, going to Duke seemed to be the best choice.

Thank you for all your prayers for wisdom. We would appreciate continued prayer that everything would go smoothly from here.

I will hopefully be updating soon with a surgery date.