They say you're never given more then you can handle.

As a mother you have to handle what you are given even if it is too much.
Everyone has a story.
This is ours.................

Craniosynostosis is one of the most common physical deformities of a fetus or newborn, occurring in about 1 in every 2,000 to 2,500 births. Craniosynostosis is the premature fusing of an infant's skull sutures. Our kids have the Sagittal suture. A baby's skull has 5 thin boney plates that are held together by a fiber-like mat. Over time, the sutures harden and close (fuse) the skull bones together. When a baby has craniosynostosis one or more of these sutures close too early restricting skull and brain growth. This causes the baby's head to become abnormally shaped and requires surgery. Craniosynostosis always requires surgery. Most parents have never heared of this condition. We were one of them.

Kaitlyn Johanna was born on 3/25/2004. After a long hard labor and delivery she came into the world at 3:30pm. Right away I noticed something wasn't right with the shape of her head. The Dr's and nurses assured me that she just had a "cone Head" and it would go away. My mom started doing research on the internet and found all these babies that looked exactly like Kaitlyn. I asked my Dr at her 2 week check up and again was told to lay her on her back and the "cone head" would go away. Then at her 6 week check up was told the same thing at this point I was not satisfied and insisted on x rays. We had x rays done at Primary Children's Medical center. Within an hour I had a call from my Dr saying she had Sagittal Craniosynostosis. We had our 1st appointment with Dr Walker the Neurosurgeon the next week. (http://neurosurgery4kids.net/walker.htm) and he told us that they like to do the surgery to fix this before they are 2 months old so it was a good thing we got there when we did. Everything at this point happened so fast. Kaitlyn had surgery on 5/25/2004. 2 Months old to the day. She underwent 5 hours of reconstructive surgery. The surgeons made a zig zag incision from ear to ear in order to reconstruct Kaitlyn's skull. She had the Open technique. This surgery is performed in the operating room under general anesthesia. A flap of skin, tissue and muscle below the skin, and the tissue covering the bone are loosened and raised up so the surgeon can see the bone. Then a strip of bone is removed where 2 sutures connect. Bones are then put into place using a plate with screws that go into the skull. After the open surgery, Kaitlyn was taken to an intensive care unit (ICU) for 3 hours then moved to a regular hospital room. My husband and I had prepared ourselves by looking at pictures on the interent as to how Kaitlyn would look after surgery. He was going to go in and see her then come let me know how she looked. After all the research and pictures nothing prepared me for what I saw. She was so swollen and screaming. I will never forget her cry to this day. I wanted to take her in my arms and let her know mommy is hear but I was so scared to hold her. She stayed in the hospital for 5 days. They did Tests to see if she lost too much blood during surgery. She never had to have a blood transfusion 90% of babies do. She had swelling and bruising around their eyes and face. Her eyes were swollen shut for 3 days. She then started to get better she was so strong every day it was so amazing watching her recover. She had a 6 month post op that went great. Everything went very well and continues to go great. Kaitlyn is now 5 years old. Never has had any other problems.

Doctors do not fully understand what causes craniosynostosis. Up to 20% of babies with craniosynostosis have inherited a genetic trait from one or both parents that results in the condition.

When I found out I was pregnant I made an appointment right away with the neurosurgeon. He assured me that there was only a 4% chance of having another baby with craniosynostosis and he laughed saying he would not be seeing me again. During my pregnancy my Dr knew I was concerned with my son having craniosynostosis. I did everything right this time. I made sure of it. We did plenty of ultrasounds all saying his head looks "perfect".

Kaiden Lee was a stubborn one.. He was 7 days late, after a failed induction we tried again on January 2,2009 this time was a success. Kaiden was born at 3:20 pm. Right when he came out everyone in the room just looked at eachother. I then asked how is his head. The nurse said looks good. Everyone was very relieved. After my son was warmed up and dressed the nurse handed me my boy.. His head wasn't right. I looked at my husband and just stared to cry. Everyone said no you are silly his head looks great just a cone head from being born.. again with the "cone head thing". When his pediatrician came in the next day we asked about his head. He told us that there is no way to tell this early. I knew Kaiden had Craniosynostosis. My husband had higher hopes he kept telling me I was just being paranoid. I made a Dr appointment the day after I got out of the hospital for the Neurosurgeon. Dr Walker walked into the room and started shaking his head. He said I can't believe this. I guess the dr's hadn't seen a 2 week old in a long time and a bunch of surgeon's came in to take a look. My husband just started to cry, remember he still thought that I was just being "paranoid" and that all was ok. Dr Walker introduced us to Dr Kestle (http://neurosurgery4kids.net/kestle.htm) a neurosurgeon that was trained on a new surgery for craniosynostosis. and Dr Siddiqi (www.utahhealthsciences.net/pageview.aspx?id=16740) the plastic surgeon. Kaiden was a canidate for endoscope surgery. A newer kind of surgery that is used for children 3 to 6 months old. The surgeon makes 1 or 2 small cuts in the scalp. Most times they are each just 1 inch long. These incisions are made above the area where the bone needs to be removed. An endoscope (a tube that allows the doctor to see in) is passed through the small cuts. Special medical devices and a camera are passed through the endoscope. Using these devices, the surgeon removes some bone through the incisions. This surgery usually takes about 1 hour. There is much less blood loss with this kind of surgery. Most children need to wear a special helmet to protect their head for a period of time after surgery.

Kaiden is going to have Endoscope surgery on March 18, 2009. He will have to wear a helmet 23 hours a day for 12 months. I am dreading this day. I know that everything will work out and my little man will be fine. I will keep everyone posted on how he does.

If I could please ask everyone to keep my little guy in your prayers over the next few weeks. I could really use them.