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Samantha's Story
"Samantha Amidala Joy was our surprise number 5..."
My husband had had a vasectomy five years before we became pregnant with Sami; she is our miracle baby. She was born at home, full term, on April 1, 2010. It was a far rougher pregnancy than any previous. I was often sick and eventually was put on "house arrest" by my midwife for too many contractions.I didn't think anything of it, however, because I was busy, stressed and 35, any of which could account for my symptoms.
Sami's microcephaly was immediately noticed at birth. It made the delivery very rough, her shoulders getting stuck briefly. That was the only symptom at birth, although she was a very unhappy baby. Her head was a little misshapen and didn't sit well on her neck. This made it difficult to pick her up and she couldn't tolerate being laid flat on her back, and riding in the car was very painful. She was held almost constantly. With chiropractic care, her head did change shape a little bit and she was eventually able to tolerate laying for brief periods and riding in the car.
Around 6 weeks, Sami lost her hearing, "forgot" how to latch and began having seizure-like activity. The doctors were afraid it was infantile spasms, but an EEG showed they were not epileptic. Eventually the docs said the cause was "shared pathways" due to her small brain. At the same time, she had a cat scan which showed an underdeveloped brain but no calcifications. Her startles, as we call them, look like an exaggerated startle reflex. No one knows really what they are or has ever seen or heard of them, which is frustrating to me.
Since then, we have dealt with those startles getting worse, new "spazzes" and a few actual seizures. We have an appointment next month with the neurologist, hopefully for some answers. Sami has hearing aids as she waits for cochlear implants next year. Some days she tolerates them better than others.
I worked hard to get her to be able to nurse again, only to have her develop stomach problems. We eventually figured out that she had an allergy to my milk, so she is on Elecare, a hypoallergenic formula. She also has reflux. She recently had an endoscope and ph probe; hopefully we will figure out more how to help her stomach. She doesn't eat enough to thrive and I am very concerned about that. I would prefer to avoid a feeding tube, but we will do it if necessary.
Sami is involved in OT, PT and special ed. She just started rolling over, which is wonderful. She does not have good muscle tone and is nowhere near ready to sit up. She is 7 months now, and about 3 months developmentally. She is a very cheerful, sweet baby. Her siblings adore her and she is the biggest blessing in our lives.
I fluctuate daily between thankfulness that she is so wonderful, and that she Is as healthy as she is, and feeling overwhelmed at this "new normal" we have been thrust into. And I am constantly appalled at the amount of people who have never heard of this illness. How is it even possible that so few know about it and it is so widespread?
- Shared by her mother, Richelle