This has always been a pet peeve of mine; when Christina saw a pediatrician for a checkup, her height always put her at the lowest percentage for growth rate for children her age. "Why don't they make growth charts for children with Trisomy 21?" I would complain to the pediatrician, who would shrug in response. (It turns out that there were old charts, but few physicians knew of them.
It bothered me that our children were "off the chart". If felt as if the medical profession had washed their hands of them once pre-natal diganosis was put in place, as if they were saying to those of us who had our children despite dire warnings from obstetricians and pressure to have amnio, and then abortions, "look, lady, we gave you a way out of having this baby, and you refused, so now YOU deal with the kid".
I know I'm not paranoid, because, until the Congressional Down Syndrome Caucus teamed up with parent advocates, the National Institute of Health did not even have a plan to pursue research related to Down syndrome. It was considered merely a matter of prevention (ie "Search and Destroy"). Not only do we have a research plan now, but we have a research budget. And now, brilliant researchers like Dr William Mobley at Stanford, and Dr Roger Reeves at Johns Hopkins, have come up with therapies to possibly mitigate the cognitive and memory delays within the next decade. There may even be benefits for those typcial people who have cancerous tumors. Something about that extra 21st chromosome starves cancerous tumors, thus Trisomy 21 'sufferers' rarely get them.
It's great to see people like Christina becoming more accepted into society. They are now "on the charts".
And new approaches to treating the symptoms of Trisomy are being discussed.
"If we can better understand the growth patterns and the rates of other illnesses that co-occur with Down syndrome, researchers may be better able to plan treatment and design preventive health programs," added Zemel. "The CDC has recognized updated growth charts as an important tool for people providing health care to children with Down syndrome." In its grant guidelines, the CDC states that new growth charts produced from the study will be broadly distributed free of charge.