Today, June 25, 2010, marked the one year anniversary of our world changing right before our eyes. It marked the one year anniversary of being told that we were officially special needs parents. It was one year ago today that Zoe was diagnosed with microcephaly.
I remember the day all too well. We had anticipated June 25, 2009 for months. Our turn for Zoe's assessment had finally come up after a three month wait list. Autism. We knew it. We had no doubt in out minds that Zoe was a high functioning autistic child. We just needed a doctor to confirm it.
She approached me with a pair of sunglasses and held them up to me. She expressed no words as six-month-old Isaiah mouthed a toy car. I put the sunglasses on and she smiled that gorgeous smile. She reached for the glasses back and put them on her face upside down. Finding her doll, she cradled it like she was its mommy, then threw a tantrum when she reached for a book and we gave her the wrong one. No words were spoken by her.
"So, she has autism, right?"
"Actually, no, she doesn't. She's too social and does make eye contact, there is no possible way she is autistic." This is where I breathed a momentary sigh of relief thinking that okay, she was just a little behind but she's perfectly healthy. Then the pediatrician pulled out her file and began going through all his notes from birth. He then took her and put her up on the bed and tested her reflexes. She loved to play with the telephone. He did a physical, and finally, measured her head circumference. Then he measured mine, then my husband's, and finally, our son's. He was apparently trying to rule out hereditary as a possible cause. My husband and I sat in silence as her looked through his notes again and began plotting measurements on a growth chart. Our hearts sank with the news.
"Well, she does not have autism, but she's microcephalic."
"I'm sorry, she's what?"
"Zoe has microcephaly. It means small head. Her brain isn't growing properly causing a small head. She's going to need bloodwork and an MRI to look for a cause, so let me get those requisitions in right away."
"Wait, what does this all mean for her? Is this common, is it normal, what does it mean for her prognosis?"
"I don't know, and we won't know until all the tests have been completed."
He went on to explain to us that Zoe was born with a normal head circumference in the 25th percentile, but growth began to slow at 8 weeks old, and by 5 months old, she was officially microcephalic, finally under the 1st percentile. Her head circumference measured 43cm while her brother, who was 20 months younger, measured 43.5cm.
So that was it. We were hit with a ton of bricks, just like that. We walked in parents of a child who was speech delayed and walked out disappointed, deflated, saddened, scared, confused parents of a special needs child.
Researching microcephaly on the internet didn't help me. It only scared me even more, but then I found the support groups and gained a whole new family who felt the same grief, disappointment, and finally, joy and pride of being parents of a microcephalic child. The internet also inspired me to create this website so that other families dealing with similar situations, whether speech delays or microcephaly, know that what it says elsewhere is not true of every case, and my little Zozo is living proof! As of today, one year later, her head circumference is 43.75cm, putting her between -4 to -5 standard deviations below normal. Isaiah's head circumference is around 46 47cm.
Going back to the support groups...They've helped each other, and me through those difficult and scary times, and I couldn't ask for a better family who knows exactly what I'm going through, and should Zoe ever end up going through what their children do, I am so thankful I have a family to turn to.
THANK YOU THANK YOU THANK YOU for all your support! Words can never express how much I love all of you and am proud to call you my family!