by Clarissa West

Created on: June 18, 2010

Abigail was born December 17th, 2006. The doctor who delivered said that it was a "text book" delivery, everything went perfect. We brought her home the same day she was born. She was our second child, our first was 21 months old at the time. Right away I noticed that Abigail was not eating well. I was breastfeeding her and she had a very hard time latching on and she would fall asleep within five minutes after she would start eating. She also would often vomit after eating. Because every child is different, we did not become concerned. When Abigail was about 5 weeks old, we realized that her eyes had not strengthened and were crossed most of the time. It was at that time that we also realized she was not able to hold her head steady.

We brought her to her pediatrician for a well baby check-up at 2.5 months old. At that time, her pediatrician commented that her head had not grown as much as it should have. The doctor did a quick eye test and said we should bring her to a specialist. Within one week, we brought her to the eye specialist. The eye specialist did her exam and then told us to bring her to a neurologist, as her issues were not an eye problem they were a "brain problem". At this point, we were very scared. Immediately we thought our baby had some terrible disease and she would surely die soon.  

At three months of age, we switched her to formula bottles and her eating abilities improved slightly. But, it wasn't enough. Although she wasn't losing weight, she was barely gaining. She was not on the chart for her height, weight, or head size. 

In the months that followed, Abigail had many brain MRIs, CT Scans, blood, and urine tests. She also seen several specialists. Nobody had any answer as to why our baby was not growing or developing. It was like Abigail was frozen intime, as an infant. Her eyes were constantly going crossed, her tongue was always protruding from her mouth, she was struggling with eating, she was vomiting, she was having intense two-hour long screaming fits, she was floppy, she was growing at an unusually slow rate, she was a mystery.

We learned to accept and adjust to the fact that we had a "special" daughter who was undiagnosed. I sat up at night, watching her sleep, wondering if I would ever see her smile, hear giggle or say "mommy", or help her take her first steps. I was grieving what I would never have, what I had lost.

My husband and I became very active with Abigail. We helped her roll over,

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