X-Rays and Results

On February 20th Felicity had x-rays of her head done. We went to the TMC Imaging Center in Rita Ranch and it just so happened that I knew the technician which helped ease me. It's not easy laying a 2 month old on their back and keeping them still without them having the proper equipment but he improvised, being gentle and caring the entire time. If it had to be done, I'm so glad it was there and with him.

On February 21st., I was at my parents house and Dr. Vondrak called. I took the call out back while my daughter was inside playing in her swing and my Mom, Dad and Mom's Cousins Jake and Kay were also inside. I remember I sort of froze when the phone rang. I already knew with everything in me that she had Craniosynostosis, but now someone confirming it will make it real. And by making it real, her having surgery will be real. My baby, my precious little 2 month old miracle. 

Dr. Vondrak confirmed the x-rays showed a closed suture, possibly two. He said he had already put a call into the office of Dr. Moss a Pediatric Neurosurgeon in Mesa. Dr. Vondrak was very matter of fact and comforting. He took the time to talk with me and repeated multiple times, she will be okay and most important, this is nothing I did or could have prevented. I remember my Mom coming outside, me telling her and then I sort of collapsed. I felt so scared and helpless and to this day, I still feel scared and helpless. I am her Mommy and completely unable to protect her from this.

Understanding Craniosynostosis

The normal skull consists of several plates of bone that are separated by sutures. The sutures (fibrous joints) are found between the bony plates in the head. The function of the suture is to allow molding through the birth canal and adjustments for the growing brain.  As the infant grows and develops, the sutures close, forming a solid piece of bone, called the skull.

What is Craniosynostosis?

Craniosynostosis (kray-nee-o-sin-os-TOE-sis) is a birth defect in which one or more of the joints between the bones of an infant's skull closes prematurely, before your baby's brain is fully formed.

As an infant's brain grows, open sutures allow the skull to expand and develop a relatively normal head shape. If one or more of the sutures has closed early, it causes the skull to expand in the direction of the open sutures. This can result in an abnormal head shape. In severe cases, this condition can also cause increased pressure on the growing brain.

Types of Craniosynostosis:

In sagittal synostosis (scaphocephaly), the sagittal suture is closed. As a result, the infant's head does not expand in width but grows long and narrow to accommodate the growing brain. The sagittal suture is the most common single suture involved in Craniosynostosis.

When the metopic suture is closed, this condition is called metopic synostosis. You may also hear the term trigonocephaly used to describe your child's head shape. The deformity can vary from mild to severe. There is usually a ridge down the forehead that can be seen or felt and the eyebrows may appear "pinched" on either side. The eyes may also appear close together.

The coronal suture goes from ear to ear on the top of the head. Early closure of one side, unilateral coronal synostosis (plagiocephaly) results in the forehead and orbital rim (eyebrow) having a flattened appearance on that side. This gives a "winking" effect. These features may also be more apparent when looking at the child in the mirror.

Both sides are fused in bicoronal synostosis (brachycephaly). In these cases, the child may have a very flat, recessed forehead. This suture fusion is most often found in Crouzon and Apert Syndromes.

How is Craniosynostosis diagnosed?

There are several clues that may cause a parent or doctor to suspect that a child has Craniosynostosis. A misshapen head is usually the first clue. The anterior fontanelle, or soft spot, may or may not be open. The suspected diagnosis is confirmed by x-rays. A CT scan is also done to make sure there are no underlying abnormalities in the brain.

Treatment:

For most babies, surgery is the primary treatment for Craniosynostosis. The type and timing of surgery depend on the type of Craniosynostosis and whether there's an underlying syndrome that needs treatment.

The purpose of surgery is to relieve pressure on the brain, create room for the brain to grow normally and improve your child's appearance. A team that includes a specialist in brain surgery (Neurosurgeon) and a specialist in surgery of the head and face (Craniofacial Surgeon) performs the procedure.

It's very important to find doctors (Pediatrician, Pediatric Neurosurgeon and Pediatric Craniofacial Surgeon) that you feel comfortable with and have confidence in.

There's a lot of information on the internet, some correct and some false (it can be overwhelming and frightening). There are also support groups available where you can get information and support from other families that have gone or are going through the same journey. Just remember every child and situation is different and it's your team of doctors that you should rely on to answer all your questions.

Newborns with this medical condition are usually kept under the wraps but by educating parents on Craniosynostosis, more infants will have a chance to live a normal life. Remember, you are your babies only advocate!!!

A Mother's Instincts

When Felicity was born, her right eye looked rounder than her left eye which in turn made the left eye look a little smaller. I took note but didn't think anything of it because there's a lot of swelling that has to go down days after birth and babies change almost daily, coming into their own. I also know what my eyes look like after a sleepless night or a good cry. 

At about 6 weeks old, her eyes were the same and now I noticed a little dent in her forehead above her right eye. So, I googled randomness such as "dent in babies forehead on one side" and that's the first time I saw the word Craniosynostosis. I read all about the condition and looked at pictures. There was one picture of a baby that looked just like Felicity with her facial features and that's when I noticed that babies left ear also had a little droop to it like my daughters left ear has. I immediately knew my daughter had this condition. It was during the research that I found out that Coronal Craniosynostosis also affects the ear on the opposite side of the face. It's strictly cosmetic and let me just say, I have always and still do love her little unique ear. 

(Backstory: My OB recommended a Pediatrician so I was going to go with him. Before even meeting him, he went out of the country for 3 weeks and had Dr. Vondrak filling in for him. I immediately felt comfortable and trusting and asked that Dr. Vondrak remain her Pediatrician.)

After gathering the information I had found on the internet, I met with Dr. Vondrak. He praised me on my Mothering skills and instincts and agreed that my concerns were valid. He ordered x-rays to be done as the first step and said a CT Scan would follow if there was any indication. He also told me about who he'd refer me to if she did in fact have Craniosynostosis. I am so beyond grateful that he is her Pediatrician! Thankfully he has seen Craniosynostosis before so he was able to talk with me about what I read and the next steps that would be taken. He also encouraged me to NOT google but to instead trust in her doctors and to address my concerns and answer my questions.

 

My Precious Miracle Baby Girl

I was told I couldn't have children and almost had a hysterectomy years ago but I didn't because I said "I won't be the one to make the final decision". However; against all odds, on April 17, 2013 Dr. Smith told me I was pregnant. I immediately burst into tears with excitement, disbelief, fear and confusion. My first thought was I love this little baby so much and will do absolutely everything in my power to keep her or him safe.

Days later I had my first appointment with Dr. Hoskins and saw my baby's heartbeat for the very first time. I was diagnosed as high risk due to a previous pregnancy that ended in a miscarriage, the severity of my fibroid tumors and my age. I kept my pregnancy private for the first 4 months until we were in the safe zone. I had a wonderful pregnancy with a very active baby day and night with her rolls, kicks, tugs and hiccups. At 30 weeks, during an ultrasound she measured a week older and was already practicing breathing and sucking, impressing the technician who called her an over achiever.

 

On my due date, December 16, 2013 they decided with me being high risk, they didn't want me to go past my due date so I was induced and preparing for a vaginal delivery. At 8 centimeters, with the baby's head in the birth canal and attempting to push, my heart rate went up during a contraction and would not come down, I was developing a fever and the baby had had a bowel movement. For the safety of my baby and myself, they had to do an emergency c-section. During the delivery, they found that the umbilical cord had a knot in it, which is rare but they said the cord was so thick that the knot didn't compromise her ability to get all of her nutrients. That was apparent when she weighed in at 9lbs .08oz and 20-1/2".

Felicity's Apgar Score was an 8 at minute one and 9 at minute five. She had to have her glucose levels checked a few times because of her weight and passed each time, no diabetes. She passed her hearing test on both ears with flying colors. And, she latched on immediately for breast feeding. Felicity was born with what they call, a storks bite on her forehead and back of her head. This has no affiliation to Craniosynostosis but I wanted to include it because so many have never seen or heard of it.

I am in complete awe of how amazing my daughter is. She defeats all odds and obstacles with her strength and determination. I am so blessed and proud to be Felicity Grace's Mommy!