Wednesday, October 31, 2012

It's Time to Change...

I would like to share something I think is very important and thanks to my friend Leah posting on her blog I am very happy to share this. There is a need for doctors to be better informed about Down syndrome, giving the diagnosis to new parents and giving correct, accurate and up to date information. Sadly students in medical school get little education in the regards to Down syndrome - the most common occurring chromosomal disorder.

I would like to share the story of Asa's birth and subsequent events. 5 years later and having another child I look back on things and feel like we were cheated. We did not know Asa would be born with Down syndrome, he was not diagnosed pre-natally. The day he was born is still kind of a blur but bits and pieces come back to me as I think back. He was born by C-Section and I was then knocked out because pain meds wore off. I was in labor for 25 hours and finally had him at 3 AM. About 10 AM the attending pediatrician came into our room, knelt down beside my bed while I happily held my new bundle of joy and blurted out the words "Your baby has some markers for Down syndrome but I am not positive so I am going to get a second opinion from Dr. D". Dr. D was our primary pediatrician. Dr. D came in later in the afternoon and said that he wasn't positive and didn't want to say for sure without the proper blood work. We also never got the cute footprints with birth date on it like we did with Gracyn, this might be irrelevant but it makes me think "why didn't we ever get Asa's"?. I did make a comment when the nurse gave me Gracyn's and she said we should of got one with Asa :( To make a long story short, it took a week to get the results and Dr. D called me, yes on the phone and said "Asa does have a Trisomy" at this point in our journey I had NO IDEA what a Trisomy was but could figure out what he was getting at. And this is where better education for doctor's would of done a world of good, because Dr. D didn't specify further, he didn't say Trisomy 21. Our shock and ah turned into pure love and joy for our baby and we never looked back, but Dr. D it seemed kept trying to burst our bubble. He wasn't a bad doctor don't get me wrong, he just wasn't the doc for us. Asa was also diagnosed with a mild variation of Cystic Fibrosis, Dr. D was the one who coined the phrase "Strike by Lightning Twice". Another instance was at Asa's 2 year Wellness Check-up and I asked about a AAI neck scan (Atlantoaxial Instability (or AAI) which is an instability in the neck which is common in people born with Down syndrome). At this point Dr. D chimes in and says he thinks Asa is too young for it and it wasn't like he was going to play football... This was one of our last visits with Dr. D and we switched hospitals and doctors!

Please go and read Dr. Julie Kinder's petition you can sign it here as well!

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About Me

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My name is Jackie and I am a mother, wife, friend, sister, daughter, cousin to many, and a dreamer of sorts. I dream of many things and one is a life full of acceptance, achievement and success for my Super Hero son Asa. He's got extra good stuff that comes with a little thing called Down syndrome. We live in the beautiful state of New Hampshire with our 2 Bulldogs; Rosie, Frankie and 36 chickens.