My (Cranio) Kid

(12) Helmet Casting

2010-10-06T21:26:00.000-07:00

Today Kellan got fitted for his helmet. It consisted of taking a cast of his head so that they can ship it off to Florida and make the cast. They only allow 2 weeks between the time of casting, to the first fitting of the helmet. The doctor informed us that we will have to bring him back once a week for the first four weeks to make sure that the helmet is working as intended. They believe he will have to wear it for approximately 3 months.


Team Work!

He was not a happy camper!

Alllll better!

(11) What is Sagittal Craniosynostosis?

2010-10-06T07:36:00.000-07:00

SAGITTAL SUTURE CRANIOSYNOSTOSIS (SCAPHOCEPHALY)

Sagittal suture craniosynostosis is a congenital condition in which the normal separation between the parietal bones has closed too early (synostosis). This separation is a suture line, and this suture line between the parietal bones is called the sagittal suture. The premature closure of this suture line is called sagittal synostosis and gives the condition named "scaphocephaly." There are other forms of craniosynostosis when other suture lines are involved. Scaphocephaly is the most common form of synostosis and it occurs in approximately 1 in 1000 newborns.

What Caused This?

In most situations it is caused by a disproportion in the size of the pelvis of the mother and the size of the fetal head, which creates a limitation of the growth of the fetal head in one direction and brings the two parietal bones together too early, creating the synostosis in the pelvis before birth. This is why it is most commonly seen with the first pregnancy. The fetus is usually a male, as males have larger heads than females. The association of these two elements is what favors the development of this condition. There is nothing that can prevent this condition from happening. Fortunately though, there is a treatment.

Treatment of Sagittal Suture Synostosis

Since there is no medical treatment for synostosis, it is treated with surgery. The surgical treatment has evolved over the years, not only by an improvement and refining of pediatric neurosurgical techniques, but also by the development of pediatric anesthesia. Many forms of surgical interventions have been, and are being employed for sagittal synostosis.

Pediatric neurosurgeons perform surgery in, on and around the brain of infants and children affected with many conditions. Therefore, they know how delicate and important cranial surgery is, and this experience permits them to perform craniosynostosis surgery with efficiency and at the same time protecting the underlying brain from any potential damage. After surgery, they monitor the infants until they are fully recovered, observing for potential complications.

Over the past 30 years, Hector E. James, M.D. has developed reconstructive surgery (craniectomy) for sagittal craniosynostosis that permits: (a) rapid intervention that (b) corrects the majority of the craniosynostosis at the time of surgery, (c) followed by a rapid recovery and limited hospital stay, (d) eliminates the need for cranial helmets and/or other operations, and (e) minimizes postoperative follow-up appointments and visits.

Other surgeons employ differing techniques for the correction of sagittal suture synostosis. More recently the neuroendoscopic techniques have become more fashionable. They are described as "less invasive" to the infant, but since they do not correct the deformity at the time of surgery, the child has to wear a medically designed expensive helmet for a few months to correct the skull shape. This mandates visits to the orthotist to mold the helmet and fit it, and subsequent visits to adjust the helmet to allow for cranial growth.

The reconstructive craniectomy not only significantly corrects the deformity at the time of surgery, but also sets in motion the normal growth of the brain. Together with the remodeling of the cranium that took place at the time of surgery, the brain growth permits for a continued displacement of the bones of the head in normal directions. In this fashion, the head shape continues to change over the subsequent months to attain a normal configuration.

http://saggitalcraniosynostosis.com/

(10) Life after surgery...

2010-10-05T20:30:00.000-07:00

I am very happy to report that Kellan is doing amazing. This surgery is literally a medical miracle. He is so much more alert. He is the happiest baby ever! We are going tomorrow to have his head casted for a helmet. The helmet will help shape his head, and make sure that his head grows the correct way. Doctors believe he will have to wear it for about 3 months.

One week after surgery

2 weeks after surgery

(9) Homestretch!

2010-10-05T20:15:00.000-07:00

The hardest day for me was the evening of the second, morning of the third. He was so swollen, I could hardly take it. He looked like he was so uncomfortable.

By the evening of the third day, things started to turn around. The bandage was taken off, and we were able to finally bathe him! The incision looked great, Dr. Blum did such a wonderful job!

By Sunday we were ready to go home, especially Kellan! As you can see from the pictures, he is our little trooper!

(8) 24-48 hours after surgery

2010-10-05T20:02:00.000-07:00

The following day we made good progress. The catheter was taken out, and I couldn’t have been happier to change his diapers again! The right side of face started to really swell up. His right eye was swollen almost shut by Thursday evening. It was so sad to watch. It was very difficult for me not to be able to hold my son. He was on “bed rest” for the first 36+ hours. I know that it was upsetting to him as well – he didn’t understand why Mommy was just leaning over his crib and not picking him up. I did everything in my power to make him feel comfortable and safe. I was beyond excited when the nurse came in and said I was able to hold him. He melted in my arms. Kellan was such a happy baby! From that point on you could see a difference in his eyes. The best way I can describe it is that he felt safe completely safe.

By now, the left side of his face had swelled up and both eyes were struggling to stay open. At one point both of them were completely swollen shut. Kellan needed a second blood transfusion after all, so they began that around 4pm on the third day and it took about 4 hours to complete.

(7) Surgery Day

2010-10-05T19:56:00.000-07:00

We were instructed to be to the hospital by 6am, Kellan was scheduled for surgery at 7:30am. Kellan had to fast from midnight on, thank God he didn’t wake up in the middle of the night hungry. By the time we got to the hospital, he was definitely ready to eat, and he let everyone know in the hospital! It took the nurses about 30 minutes to get us back into a room, once they did, Kellan calmed down and was the sweet boy I know. He was giggling and smiling at all the nurses. They weighed him, took some vitals, and then we waited for the anesthesiologist to show. The gentleman was very kind, he explained exactly what it was he was going to do for Kellan, and he reassured us that he was in good hands. There were only 2 anesthesiologists in Las Vegas that Dr. Blum would work with when it came to infants, so I trusted that Kellan was in good hands. Shortly after the anesthesiologist spoke with us, Dr. Blum came by and explained the surgery one more time. He told us it would take him about an hour to do the surgery, but that it would take the anesthesiologist that long as well, if not longer to actually do his work. So off they rolled Kellan in his metal crib.

The next four hours were the longest four hours of my life. You read that right, FOUR hours! Not 2, not 3, but 4! I was pacing back and forth and about to bust into every operating room. Dr. Blum came through the double doors, and I waited for him to speak…it seemed like a lifetime before he opened his mouth. I couldn’t wait – so I shouted, “is he ok?” Dr. Blum said he’s doing great! He’s in the recovery room right now, and will be taken up to the Pediatric Intensive Care Unit (PICU) shortly. I started to cry, my husband and I couldn’t have been more relieved.

About 30 minutes went by and a nurse came down and got all of the family to bring up to the PICU. I wasn’t prepared for what I was about to see. My husband and I went back first. Seeing Kellan all bandaged up, and sleeping so soundly broke my heart. I instantly started crying. On the other hand, we honestly could already see the difference in his forehead! It was crazy! Kellan slept for a few hours after surgery, which was expected. He woke up here and there when the nurses were poking him, but didn’t even open his eyes. I definitely was not prepared for the sound of his voice! When he cried it didn’t even sound like him! From having the breathing tube down his throat, his cry sounded very dry. It was heartbreaking! Thankfully his cry is back to normal.

As the evening went on, he slept, opening his eyes here and there. Around 3:30am he woke up crying and I was finally able to feed him a bottle for the first time. He was still being fed through his IV, but as he slowly got his appetite back, I was able to feed him, and he was in turn taken off the IV.

(6) Pre Op

2010-10-05T19:41:00.000-07:00

On Tuesday morning I took Kellan to the hospital for his pre-op. The doctor required blood work so that we could see what blood type Kellan was because there was a very good chance that he would need at least one blood transfusion, if not two. He also had to have an x-ray done of his lungs, to make sure they were nice and clear. If he had any sign of a cold, they would not operate on him. It seemed like we were at the hospital for hours. Once all the paperwork was complete, and they were done poking my poor little man, we headed home for the night.


His forehead was very prominent because his head was growing oblong, pushing his brain out the back of his head.

This is a great view of the back of his head, showing the "ridge' that I have been talking about.

(5) Dr. Blum

2010-10-05T19:35:00.000-07:00

On Thursday we met with Dr. Blum. Without even having to look at the CT scan or the results we had brought with us, he started to explain to us a condition called, Sagittal Craniosynostosis. My worst nightmares were coming true. I was completely heartbroken, and I knew were this conversation was going to go due to all of the research that I had done. He started to explain to us what the condition was, and how it can possibly effect my son’s physical and mental development in the future if it was not handled immediately. Since it was caught so early, the doctor explained to us that we had a window of a week or two to do the less invasive surgery because of his age. We were told that his nurses would get in contact with our insurance, get the surgery approved, and then we would move forward with scheduling it. Again, I was expecting a day or two to go by before we would hear from his office. Within 3 hours a nurse from his office called and said that the insurance approved it, and that we were scheduled for surgery the following Wednesday at 7:30am. Everything moved so fast, we didn’t even have time to digest what we were just told.

(4) Let's Back Up

2010-10-05T19:33:00.000-07:00

After leaving the pediatrician’s office on Wednesday, I immediately jumped on Google and entered: “My son was born without a soft spot” and the condition called Craniosynostosis came up. After hours of research, I was convinced that this is what my son had, and that the only way to correct it was by surgery. He was born with this condition, so my gut feeling of “we’re going to monitor him” not sitting well with me, was ringing true.

Here are a few of the sites that I found very useful.

http://saggitalcraniosynostosis.com/

http://www.pedisurg.com/PtEduc/Craniosynostosis.htm

http://www.sprik.com/news

http://marcroftfam.blogspot.com/2008/03/sagittal-synostosis.html

http://www.worldcf.org/medical-info/craniofacial-resources/sagittal-synostosis/

(3) CT Scan

2010-10-05T19:25:00.000-07:00

On Wednesday, September 1^st, my husband and I took Kellan to Steinberg Diagnostics to have the CT Scan done. They had to sedate Kellan, because of his age, since you can’t move at all when the scan is being done. Watching my son be medicated, and then having him fall asleep in my arms, was much more difficult than I thought it was going to be. I definitely teared up! It was very hard on my husband as well, I look to him for strength, yet at this moment he too was emotional and vulnerable. About 20 minutes after taking the medicine, Kellan was sound asleep and I took him into the room where they performed the scan. Thankfully I was able to stay in the room with him the entire time. After the scan was done, I had to try to wake Kellan up so that he could prove to the nurses he could swallow, then we would be allowed to go home. It took him about 15-20 minutes to wake up, and when he did, he wasn’t a very happy boy! He ate a couple of ounces, proved he could swallow, and then I gracefully got him out of there and home. He slept most of the day, which I was warned he would probably do. I was told by the nurses that we would probably get the results on Friday at the earliest, possibly Tuesday since Monday they were closed for Labor Day.

Three hours later I received a phone call from my pediatrician. They had received the results of the CT scan, and subsequently they had already made an appointment with Dr. Blum, a Pediatric Neurosurgeon for us for the following day.

Note the shape of his head.

Side view, showing the ridge on his head. He had an oblong shaped head, his brain was being pushed out the back.

Very prominent forehead.

(2) Switching pediatricians

2010-10-05T19:22:00.000-07:00

At 3 months of age, I decided to get a second opinion in regards to my son’s head. During the last visit that we had with our old pediatrician, he voiced a little concern about his head not taking shape and that we were “running out of time.” Again, he said he would keep monitoring it, and if it didn’t change over the next few weeks, we would have to “do something about it.” He never mentioned what “do something about it” would entail nor did he even hint that surgery could be in our future.

After hours of research and speaking to many other Moms, I decided on who I would get my second opinion from, and I made the appointment for August 25, 2010. After the doctor performed the routine check up, he asked if there was a reason for the visit, besides for him to meet his new patient. I informed him that I was very concerned about his head, and I wanted a second opinion. The entire time that I was speaking to him, he was starring at my son’s head. He immediately asked if Kellan had had a CT Scan done of his skull, which I quickly replied no. He expressed great concern and insisted I get a CT Scan immediately and that I needed to follow up with a Pediatric Neurosurgeon. As soon as he said the word Neurosurgeon, I felt that I was in the twilight zone. I heard every tenth word, at best, that came out of his mouth from then on. I was in complete and utter shock. As soon as I left the doctors office, I started crying my eyes out. The nurse assured me that she would be calling me in the next day or two with the information on which office I would have to go to, to get the CT Scan done. They first had to call my insurance and get it approved, and also ask for a referral for a Pediatric Neurosurgeon. The following day I received a call from my pediatrician regarding the scan, and I immediately called and made an appointment for Kellan.

(1) My son at birth

2010-10-05T18:50:00.000-07:00

Kellan Pierce Foley, was born on May 22, 2010 at 3:17am. He weighed in at 6lbs 3oz and was 17.25 inches long. After 20 rigorous hours of labor, and 3 strenuous pushes, I was told to stop by the nurse. She couldn’t figure out where her fingers were hitting my son, whether it was on his forehead, between his nose, or what. The charge nurse was called in, and after a few looks, she realized my son was coming out butt first. On Wednesday, during one of my regular OB checkups, my doctor checked me and Kellan was head down. So, between Wednesday and Friday, he decided to flip to make things interesting. :) After I was given this wonderful news I was quickly wheeled in for a C-section.

I might be bias, but Kellan was the most beautiful little boy. He had gorgeous olive skin, big blue eyes…. and you could tell he was extremely peaceful. He is such a joy to be around, and one of the happiest babies I have ever met. After examining my son, I noticed that he had a ridge on the top of his head. With concern, I asked the pediatrician on call at the hospital if this was normal, or if this would go away with time. The doctor, along with every nurse at the hospital, kept reassuring me that this was a typical “breech” head. For some reason this didn’t make sense to me, only for the mere fact that he was head down since 27 weeks, and up until 2 days before I delivered. I was not comfortable with this answer.

The following week we went to the Pediatrician that was recommended by my OBGYN for a regular check up and to schedule his circumcision. The pediatrician didn’t express any concern for Kellan’s head, but mentioned he would monitor it for the next couple of months. Again, I was never satisfied with the answers I was receiving in regards to his head. I am by no means a doctor, but it was obvious that the ridge on the top of his head was bone, therefore how was it going to change over time? It wasn’t.