The journey with my son and his condition, Sagittal Craniosynostosis.

My son was diagnosed with Sagittal Craniosynostosis Thursday, September 2, 1010, and he had surgery to correct it on Wednesday, September 8th. This is my story, journey, experience...I hope this helps relieve another family, as the Sprik family did for me.

Wednesday, October 6, 2010

(12) Helmet Casting

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?


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.

Tuesday, October 5, 2010

(10) Life after surgery...

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!

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

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.