Wednesday, January 4, 2012

#4 - Things I wish I'd known about Down Syndrome 6 years ago

Cate is a healthy child
It is funny that now I get a little pang when I hear "they had a healthy baby...".  Never thought about it before Cate but when someone says that they mean the baby doesn't have down syndrome or any other genetic issues in addition to the obvious general health items.  The first book I looked after after Cate was born descibed every conceivable medical issues she might have from ear infections, to heart defects, intestinal defects, dementia, increased risks of some cancers, on and on and on.  So in turn, my thought after the diagnosis was that Cate was not a healthy baby.  And because she had a complete AV Canal Heart Defect in some ways she was not a healthy baby but too look at her you couldn't tell.  Cate was adorably chubby, very pink and very happy as a baby and until she was 6 months old she never had an ear infection, cold, or fever so all in all she was pretty healthy.  Cate's heart defect of course was way more scary than her having Down Syndrome when she was an infant.  There is nothing like a stay in the NICU to put things in perspective - those babies there had much scarier problems then DS.  I worried about Cate's heart until months after her surgery.  But she never worried about it at all - her body kept right on growing and bounced back from open heart surgery after only a 6 day hospital stay.

Cate on the way to open heart surgery - 5/9/06

Daddy & Cate first nap at home post surgery - 5/15/06
Of course we have had our health issues with Cate but in reality they are not much more than most kids, and much less than many kids.  She has had some respiratory issues, including a couple bouts of pneumonia as a toddler due to the small sinus cavity & pulmonary passages common with DS, but she has out grown them now.  She has had 4 sets of ear tubes because of the tiny, crocked ear canals that tend to hold fluid and affect her hearing, but she has had maybe one true ear infection in her life.  Beyond that she doesn't have any problems that are longer lasting than your average cold and when she does get sick it barely keeps her down.   Now my "healthy" daughter, Lucy, on the other hand has had multiple ear infections, reflux, pneumonia, viral meningitis, croup twice, and food allergies that cause her to take daily meds and me to carry an epi-pen, and she is only two.  So when you look at it in perspective, I am lucky because I have two healthy daughters because the majority of the time we aren't running around to doctors and worrying about every cough.  That laundry list of things listed in that book - well most them apply to any child you just don't get a book telling you that when they are born.  Obviously some things are more likely for a child with DS but oddly enough there are some healthy issues that are almost unheard of in people with DS like tumors.  So just because your child has Down Synrome doesn't mean your child can't be healthy.

Cate giving a performance - Dec 2011

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