Babies with Down Syndrome: A New Parent's Guide by Karen Stray-Gundersen



A good resource for parents (and especially new parents, though its helpful whether you're new or old at parenting) faced with the difficult challenges inherent in raising a child born with Down syndrome (DS). While not encyclopedic, Babies with Down Syndrome: A New Parent's Guide covers the DS basics -- be it developmentally, educationally, biologically, psychologically, and provides an overview (a DS 101 education) regarding both how children with DS are both alike and unlike "typical" children who aren't born with that extra something "special" -- that discombobulating 47th chromosome.

What I appreciated most was the book's focus on the potential increased odds of health complications which can arise with children born with DS, and what to look out for and ask your doctor about (who may not be that well versed in DS) -- heart abnormalities, gastrointestinal problems, hypotonia, vision and hearing problems, leukemia, on and on, that, while not comforting, at least perhaps mentally prepares the parent for the possible rocky-health-road ahead.

The book offers hope too, in a non-didactic, non-preachy way, for the parent who perhaps has learned a few months in to the pregnancy (like my wife and I did, and a fact much more common these days with AFP (Alpha-Fetal-Protein) testing being recommended for all pregnancies) that their baby will in fact be born with DS.

The book offers real hope that your child with DS won't be a scary baby monster that will ruin your life. Oh, life will be more difficult, yes, no doubt, but a pre-birth diagnosis of DS, the book opines (and I tend to agree), doesn't necessarily mean making an impromptu appointment with Planned Parenthood. Statistically, of course, most who learn of their DS diagnosis in utero do make that appointment with Planned Parenthood, but the book demonstrates with lots of longitudinal research and anecdotal evidence that oftentimes, babies born with DS have no extra health problems at all, except for the obvious, innate "slowness" in development, particularly in speech, as compared to non-developmentally disabled children.

I'm glad this book was available for my wife and I during that difficult time when we were advised abortion was our best, if not only, option. Yes, after two complicated open heart surgeries (both of them near-death experiences for our daughter), along with upper G.I. complications, multiple knee surgeries because of her hypotonia (i.e., "low muscle tone") hearing and vision problems (but thankfully, no leukemia, knock on wood, ) I'm glad we considered the path less taken in keeping our child diagnosed with Down syndrome. She's a treasure and a beauty and our lives, despite the daily hardships, would be a lot emptier -- and a lot less meaningful -- without her.

{Postscript: Our lives together, turns out, have become a lot less emptier, with the absence, since Dec. 27, 2013, of our daughter, Megan Hope, who passed away suddenly from heart problems.}

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