A Parent's Perspective: Audrey's Story

At Bridge Kids of New York we highly value the importance of family involvement and believe in sharing parent voices whenever possible!  Below is a beautiful article submitted to us by a very special Mommy whose daughter is diagnosed with Microcephaly.  We hope her story will touch your heart the way it did ours!

Any parents out there who have just had their child diagnosed with Microcephaly are probably pretty scared right about now if you have read anything on the Internet.  I want to be the first parent to write something positive to give some of those scared parents out there hope, here is our story:

Audrey Paige was a full term baby, born at 39 weeks, weighing in at 6lbs 15 oz and 19 inches long.  I had a great pregnancy, was monitored weekly from my high risk doctor and OB/GYN.  That means I had a sonogram every week.  All sonograms and tests were perfect and she got a  9 out of 10 on the APGAR test when she was born.

At 3 months I noticed her head was smaller than some of my friends kids heads so I brought this up to my pediatrician who said her head is 2 standard deviations below the norm, in the bottom 5% and I should see a neurologist for “microcephaly”.  Being the type A personality that I am, I ran home and googled microcephaly and read every story on it, most of the stories being negative and I cried my eyes out, called my husband and told him he had to come home.

We made an appointment with our first neurologist who recommended a CT Scan ASAP, which scared the hell out of me.  We had the CT scan the same day and results came back negative for the Sutures closing and Craniosyntosis.  Me and my husband went out and celebrated our 2nd wedding anniversary that night and were thrilled, we thought that meant she didn’t have microcephaly.

As she turned 4 months I had to get her registered for the Day Care at my office and our pediatrician wrote that she was positive for microcephaly on her medical paperwork.  I didn’t understand and decided to seek out another opinion.  Luckily I work for the greatest company in the world and had my cousin marrying the daughter of the chief pediatric neurologist at a well renowned hospital and they set me up with 2 appointments in Boston to meet with 2 chief Pediatric Neurologist. 

We flew up to Boston for the day and did bloodwork and had the evaluations, both of which recommended an MRI.  Her bloodwork came back negative for any infections that may cause microcephaly.  And one doctor said she had a 1 out of 7 chance to have seizures, cerebral palsy or mental retardation.  So we said to the doctor, “That means she has a 6 out of 7 chance that she doesn’t have any of those!” 

The Boston doctors set me up with the Chief Pediatric Neurologist at a well-known NYC hospital where we had Audrey’s MRI.  Turned out I grew up with the pediatric nurse that was taking care of us that day, (Someone up there is looking down on us for sure!) and she eased my nervousness and I can’t thank her enough for that day. 

The MRI came back saying that she was missing part of her Cerebellum and had a “possible” Dandy Walker Variant.  From past experience, I did NOT look that up online and just asked my doctor what that means.  He said that the missing part of the cerebellum and the microcephaly would have been diagnosed within my pregnancy at 20 weeks.  Remember I had a sonogram a week my whole pregnancy.  I went back to my high risk doctor and OB/GYN who both showed me the Cerebellum in my sonogram pictures.  I even remember saying during one of my visits, “Wow she looks smart already!”  So none of this makes sense to us and we keep pressing for answers.  We then go see a Geneticist and are currently awaiting the results of the genetic blood work.

The only recommendations all 3 of my Chief Neurologists have is for her to start in Early Intervention and that she will “Write her own book”  They said she may not be sitting up by the time she is 1, she may not be crawling by the time she is 2.  Audrey was sitting up at 7 months old, crawling at 13 months old and she is now 16 months old and can stand and is almost there!

Moral of the story is:  Be positive, don’t take no for an answer or be told that your child may or may not be able to do something.  Get your child in Early Intervention as soon as possible, it is a life saver!  Be an activist for your child and you will get the services you need to help your child develop at their own pace.  They will eventually get there and having your child a little developmentally delayed is nothing to be ashamed of.  Also, don’t deny it if there is something “not right”.  You are the Mom and trust your instincts, even if other people “just don’t see it”.  YOU know best, you are the Mom!  Families that are in denial wait too long and get the services later rather than sooner and wish they started earlier.  The sooner the better!  Audrey has been in PT since she was 6 months old, Speech/feeding & OT since she was 11 months old and just started Special Ed services.  All of these wonderful Services are available to your children and should be take advantage of and these teachers are the most loving caring people in the world.  My whole family has learned so much from watching these sessions and working with our daughter.  She is the happiest little girl and works so hard during all of her therapy sessions.  She has come a long way and I cannot wait for the rest of her story, because I know it will be a good one!

Hopefully this article will help some parents know that there is hope and if you are positive and believe in your faith and children, they can do amazing things, the brain is a mysterious organ and the parts that do work, can make up for the ones that are lacking.  So never give up hope, you never know!

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