It was imperative that the surgery was done before she was three months old or the pressure on her brain could cause life long damage. Her parents had less than a month to decide to go through with the surgery, to get a second opinion, to find a qualified surgeon, investigate costs and to process this crisis. NOW.

In researching the disorder they discovered that a normal infants skull cap is made up of five bones held together by fibrous tissue called sutures. They are not closed but open allowing space for the brain to grow bigger and develop normally. This is why an infant has a "soft spot" on top of the baby's head. Her parents discovered that this is a relatively new diagnosis and that one in two thousand babies are born with some form of craniosynostosis. Many still go undiagnosed until it is too late, if ever.

Baby Lexies' Mom was concerned about the odd shape of the baby head. It took a second and third pediatrician before she was properly diagnosed. Fortunately for us, in time to do something about it. X-rays were finally ordered followed by a cat scan to confirm that yes, our precious two-month old infant was going to have to undergo severe dangerous invasive head/brain surgery to relieve the growing pressure on the front part of her little brain.

Her parent's initial reaction was shock, numbness and disbelief. But they had little time to dwell on the problem, they had to be strong and act quickly to deal with the crisis they were facing. They only had one month. They were running out of precious time. The decided that the only reasonable choice to give baby Lexie a normal life was to go through with the surgery.

After the decision was made a surgeon had to be found. They did extensive research to find the most qualified pediatric neurosurgeon. Ultimately they ended up with the perfect doctor, he specialized in brain tumors both malignant and benign. The parents were comforted to realize that the surgery little Lexie needed was what the doctor did on a regular basis.

They were anxious and didn't know want to expect during and after surgery. The post surgery recovery and four days in the natal intensive care unit were depressing and difficult, worse than the anticipation before the surgery. Lexies' initial recovery was tough on everyone. She was so helpless, swollen and in so much pain. Her parents weren't prepared for the overwhelming amount of swelling to her entire face and head, even her little eyes were swollen shut and her eyelids were turned up. It broke her Mom' heart seeing her helpless baby girl in such a state, but she never left her side.

The good news is that three months later she is a happy, healthy, thriving beautiful baby developing normally.

The bad news is... when she had her two month check up last week and when her parents believed it was all over and soon to be forgotten... the surgeon took one look at baby Lexie and told her parents that she will need more surgery at a later date, to balance the rest of her head. He told them that it was too early to tell much more now. He will know more at her next appointment in three months.

We wish baby Lexie the best of luck and send all of our love.

This article was written by Nancy O'Connor Ph.D.. She worked as a Psychotherapist for 23 years and was the Director of the Grief and Loss Center in Tucson, Arizona for 12 years . She is the author of the best selling book Letting Go With Love: The Grieving Process and How to Grow Up When You're grown Up: Achieving Balance in Adulthood. How To Talk To Your Doctor. Her books may be reviewed and purchased at http://www.lamariposapress.com