Shannon Elizabeth Higgins was born in Santa Rosa, California on July 14, 1998 during the summer's first heat wave. She was born via c-section after being induced because it was expected that she was to be quite large. A sonogram showed a possible weight of 10 lbs. four weeks prior to my due date. So with much anticipation on our part, she was induced but did not descend so she was born into this world with the help of a handful of doctors and nurses. She was never under any distress although I was, but that's another story. After a few air conditioned days in the hospital, we left for home with our brand new baby girl. Neither we nor the doctors were aware of her having any disabilities at that time.

Shannon gained weight well and was breast fed for the first 6 weeks. Because of a combination of my being tired, having two other children to care for and Shannon not latching on very well, we cut the breastfeeding short. I would have liked to have given her at least six months but it was just too difficult at that time. In retrospect, the PMG was giving her trouble with latching on to the breast and the bottle, but the bottle seemed to be easier for her.

I went back to work part-time when Shannon was 3 months old. She was in family day care with a wonderful provider we've known for many years and has taken care of all three girls at different times. She had no serious colds or infections from being exposed to other children and adapted to the environment quickly. I did notice that Shannon was a bit more quiet than my other kids at that age and her body was very relaxed. She almost seemed a little too easy to care for. My maternal instinct was alerted but I also felt I shouldn't complain that my baby is too easy, I ought to count my blessings. So I just put those thoughts to the side.

At Shannon's six month check up, we became concerned that she was not progressing. She could not sit unassisted, did not have a pincher grasp, and was not vocalizing beyond cries and some giggles. She had also developed a propensity to turn her head to the left and the back of her head was becoming noticeably flattened on one side. Her head was quite large and that was also noted but there is a family history of large heads. All of these things were noted at her 6 month check up and we were to keep a close eye on her progress or lack thereof. We were to try to position her for sleeping with her head turned the other way. This was next to impossible. Her next appointment would be at ten months, or sooner if needed.

Before her ten month well check family and friends had also become quite concerned about Shannon's lack of development. She had made very little progress. I was still hoping that she was a late bloomer and that everything would be alright although I was becoming extremely anxious. Why was this happening? She seemed like such a happy healthy baby. I knew we had an appointment scheduled in May, so I didn't see any harm in waiting until that appointment to address these issues. Maybe she would even show some progress if we worked with her more diligently.

Finally the 10 month check-up arrived and the ball got rolling from there. For the reasons mentioned above, her pediatrician wanted her to be checked out right away. Within three days we were scheduled for an MRI and CT scan, scheduled for an appointment with geneticist and also with the county's early intervention specialists. I was glad to pursue an answer to our concerns but also becoming quite frightened by the urgency. The initial concern was that she might have hydrocephalus (water on the brain) and that could be causing her delayed development and the enlarged head size. Therefore the MRI and CT scan were our most important source for gathering information.

Without detailing every moment that followed from this visit I will try to summarize the findings. It was a frightening and profoundly sad period for our family. My deepest fear was that we would lose her altogether. I desperately needed to hear that she would survive this.

We soon learned she did not have hydrocephalus, a tumor, craniosynostis, nor did she have any genetic abnormalities that they could test for. Everything looked clear except for an abnormality that showed up on the MRI. They would need to get back to us on that. After what seemed like an eternity, but was really only a few days, the geneticist spoke with me over the phone about Shannon's condition. She delivered the news with honesty and compassion. Shannon had a brain malformation that fell under the category of Cortical Dysplasia. It also looked like Polymicrogyria but they needed to get a second opinion from a specialist in that area, Dr. William Dobyns from Chicago.

I was stunned. I could barely pronounce the word Polymicrogyria. What did that mean? How was this going to effect her? Would she be okay? I had a million questions but all I could really do was thank her for quickly delivering the results, hang up the phone and go cry.

So began our entrance into the world of the disabled. We searched the Internet for information. We talked with family and friends to spread the word and look for help. We immersed ourselves in gathering information and getting the help she needed. We hooked up with other families through the Internet and they become one of our most valuable resources. Shortly after learning of Shannon's diagnosis, we attended a The Lissencephaly Network Conference in Texas that addressed the areas of research and care for kids with her disorder. And, best of all, the specialist, Dr. Dobyns was presenting at the conference. That was an overwhelming but valuable trip. She was examined by Dr. Dobyns and other members of his team and we were given an evaluation and report for Shannon. He confirmed that she did have Polymicrogyria. At home, we were put in contact with local agencies like Golden Gate Regional Center, Easter Seals and California Children's Services to help with Shannon's condition.

That about covers the initial phase of our learning of Shannon's diagnosis. Thanks for reading it.  I will add an update version to her website soon to share all the exciting things Shannon is learning and the obstacles she has overcome.