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Oct '07

More about Wes and his Down syndrome

Today was Wesley’s 5-week checkup. He clocked in at 5 lbs 10 oz! Even more amazing, tonight I put him in a preemie gown (the kind that’s like a sack) and it was a little tight around his feet! He’s growing.

Last week John and I took Wes to Primary Children’s Hospital in Salt Lake City to meet with a genetic counselor. We discussed Wes’s condition of Down syndrome and went over what we can expect with him, medically, mentally, and physically.

Here are some things I learned about our baby and Down syndrome.

1. He was the product of Trisomy 21, which means there’s an extra 21st chromosome in every cell that slightly changes the development of the body and brain. The extra genetic material is a totally random thing originating with the sperm or the egg. About 95% of people with Down syndrome have Trisomy 21.

2. Any normal couple has a 1 in 800 chance of having a kid with DS.

3. Since we already have a kid with DS, our chances automatically jump to 1 in 100 for future children.

4. About 5,000 kids with DS are born every year. Eighty percent are born to moms under the age of 35.

5. People with DS are at a higher risk for certain medical conditions. The American Academy of Pediatrics outlines the probability as follows. There’s an increased risk of:

    congenital heart defects (50%); leukemia (<1%); hearing loss (75%); otitis media (50-70%); Hirschsprung disease (<1%); gastrointestinal atresias (12%); eye disease (60%), including cataracts (15%) and severe refractive errors (50%); acquired hip dislocation (6%); obstructive sleep apnea (50%-75%); and thyroid disease (15%).

That’s a scary list, isn’t it? I don’t even know what some of those conditions are. Hopefully we won’t ever need to find out. So far his heart looks good (we’ll take him to a cardiologist next month to make sure), his hearing checks out normally, and he doesn’t have cataracts. We’ve been instructed to take him to see a pediatric ophthalmologist and an ear/nose/throat specialist before he’s a year old to check up on some of those other conditions.

6. Mental impairment can range from mild (IQ: 50-70) to moderate (IQ: 35-50) and only occasionally to severe (IQ: 20-35).

7. Down syndrome kids look more like their families than they do one another.

8. Our son, like every child, will have a full range of emotions and attitudes, creativity and imagination, interests and talents that will shape his life and add color to our everyday experiences.

9. People with Down syndrome can grow up to live independent lives with varying degrees of support and accommodations needed. They can hold jobs and sometimes live on their own. I’ve talked with people locally whose DS kids have gone on to go through the temple, serve missions, and even be ordinance workers in the temple.

10. The most important thing I’ve learned is that despite the statistics, Wes could totally wow us, and probably he will. Every child will have some problems during his life. With Down syndrome, it’s a little more intimidating up front because the possibilities of what could go wrong with him are spelled out pretty frankly. But one thing I’m learning is that, like with any kid and any situation, you have to expect the best, and we’ll try to.

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