When Brennan was born, the pediatricians spent a great deal of time telling us about the "maybe's" related to his health. Our doctors and most of the medical information I've read say "increased" risk of this, "increased" risk of that. But, percentage increases are rarely given. And, if they are, they are often so broad that they are not useful. Fortunately, most health concerns are correctable or can be managed.....taking medication for controlling thyroid levels, getting glasses to correct vision, getting ear tubes or hearing aids to restore hearing loss.
One of the scariest health concerns is a heart defect. And, although having to worry about your child's heart and preparing them for surgery would be terrifying, it is almost always correctable...often with less than a weeks stay in the hospital. The other scary health concern is cancer. Yes, an increased incident of childhood cancer. To me, this was the scariest health risk by far....since it was the one that could potentially take Brennan from us. But, the doctors and literature never told me what the percentage increase of was.
Over the past year, I have attended a couple of workshops about health concerns related to Down syndrome. The first was on ENT concerns and was presented by Dr. Sally Shott. She provided a ton of useful information, but one part of her presentation really struck me. The reported incidence of hearing loss in people with Ds is 38-78%. However, during Dr. Shott's research, she found that what is defined as hearing loss in this statistic is not what is used to define hearing loss in typical kids. I was shocked. Shouldn't the definition of hearing loss be consistent regardless of a diagnosis? She went on to say that, with proper medical care and placement of ear tubes when necessary, hearing loss in kids with Ds is actually 5-10%.
Additionally, after an entire year, I finally heard the actual percentage of kids with Ds that get cancer. My initial assumption was 20%, maybe even 30%.....I figured it must be a pretty high percentage since it was always one of the first things mentioned by both doctors and literature. At the workshop I attended last month, I learned that the percentage is actually 1-1.5%. And, although when it comes to cancer any percentage is too high, 1-1/5% is still a really low percentage. I think if this percentage were presented to new parents, instead of the totally vague "increased" risk - it would prevent a great deal of worry that I know I had when I heard and read this in Brennan's first days of life.