Sunday, 21 October 2012

"Why your kid is crappy" - medical conditions

There are many physical differences that can come along with an extra 21st chromosome. Because these birth defects or anomalies can be seen on ultrasound, about 50% of the time DS can be suspected before birth.

With Phoenix, we had great ultrasounds. All her measurements were good. Her heart looked good. No issues with her intestines or organs. She was a pretty healthy little baby. We even had a fetal echo (ultrasound of the heart) done at about 25 weeks. The technician said if there was anything there, it was too small to detect on the scan. It was great news all around.

Because there is a long list of differences that can can happen with kids with DS. These include:

Birth defects involving the heart, such as an atrial septal defect or ventricular septal defect
Eye problems, such as cataracts (most children with Down syndrome need glasses)
Gastrointestinal blockage, such as esophageal atresia and duodenal atresia
Hearing problems, often caused by regular ear infections
Hip problems and risk of dislocation
Long-term (chronic) constipation problems
Sleep apnea (because the mouth, throat, and airway are narrowed in children with Down syndrome)
Teeth that appear later than normal
Under active thyroid (hypothyroidism)

However, I'm heading back to my complaint about laundry lists like this one.

It doesn't actually tell you what life is going to be like with a child like mine. It gives you a list of possible medical conditions.

And even with some of the above conditions, it doesn't tell you that many of them, such as heart defects and intestinal blockages, are fixed by routine surgery.

These 'lists' also do not describe the joy that children with DS bring to their parents and siblings or to the happiness they themselves find in their lives. And they do, find happiness that is. There is a great article here that has found that 99% of people with DS surveyed liked their lives, 97% of them liked who they are and 96% liked how they look.

99% of people with Down syndrome are happy with their lives.

These are astounding numbers.

 I can't think of any population of people anywhere (with the possible exception of Buddhist monks) where 99% of them would say that they were happy with their lives. Seriously.

This says a lot.

It says to me that the scorn and derision with which many people view those with DS is misplaced. It also says to me that our values in North American society such as our obsession with monetary success and our emphasis on having a superior intelligence are woefully misguided. Because, if it isn't obvious to you now, being smart and successful doesn't necessarily make you happy.

And then there is my little love muffin right here. Who brings so much happiness and fullness to our lives. Who could imagine how completely Phoenix embodies life and health?

Certainly not anyone who is given a laundry list of why their kid is crappy.

1 comment:

  1. YES!! Exactly. And if that doesn't make you reexamine your priorities as a run of the mill 46er stuck in the rat race, nothing will.