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.
8 comments:
I completely agree with you, Sharon. Thank you for posting this - I had no idea about the actual percentages as well. I definitely feel better knowing this. : )
Thank you for posting this. I didn't know the percentage was that low, either. Makes me feel less worried, for sure!
Yes, thank you especially for the info on cancer. That has always been a biggie for me.
Very interesting about the high % for hearing loss. I always wonder about that. With the percentage being so high, I wonder if that also accounts for why people with DS have speech problems or at least sound similar to each other. I have often thought that the sound quality of the voice sounds similar to the sound of the voice people who are deaf. Interesting ?!?!?
Ditto what everyone else said...thanks! I think we have enough to worry about. It's nice that someone just gave you the basic facts!
Are you kidding me? This is unbelievable. Brennan is blessed to have such an amazing advocate.
I love you,
Aunt Shauna
Hello Sharon. I have a one year old named Jack with DS. I am so glad that you posted this info. So much of the DS info out there is seriously out dated. There are a lot of parents not aware of this!
And Brennan is a doll : )
Hi, Sharon. Great post. I'm curious about the cancer number. Am I wrong, or is it that our kids have a higher likelihood of getting leukemia? I'm pretty sure that I heard that overall, the rates of other forms of cancer are actually LOWER for our kids than the general population.
Jennie - I just looked back at the information from the health workshop attended and it said 1-1.5% chance of leukemia, but did not mention other forms of cancer. I hadn't heard about a lower risk for other forms of cancer, but wll definitely look into that!
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