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5 days ago
Life, the universe, and motherhood according to me. I'm a feminist, a liberal, a Presbyterian, and mom to three amazing young children, one with Down syndrome. All that is reflected here, along with whatever I might be feeling at the moment (quite often, it will be exhaustion).
Do not use the italic, large-size, or boldface characters some computers are capable of generating.
Special Olympics chairman Tim Shriver said yesterday that the president called him from Air Force One to apologise even before the show was broadcast.
“He expressed his disappointment and he apologised in a way that was very moving. He expressed that he did not intend to humiliate this population,” Mr Shriver told ABC’s Good Morning America.
I am Sarahlynn. I’m a 34 year old mom and writer married to a 31 year old director of business intelligence for a healthcare organization. We have two daughters, ages 2 and 5. Our 5-year-old has Trisomy 21, and we learned her diagnosis when I was about 20 weeks pregnant.
Although I didn't feel so at the time, I was lucky in so many ways. I was lucky because I live in a wonderful city with tremendous medical resources, and I was lucky because my obstetrician was tied in with many of those resources.
I was standing at my desk at work, gathering some files to take to a big meeting, when my phone rang. I probably should have let it go to voice mail, but I answered instead. It was a medical assistant from my OB/GYN’s office. She told me that I’d screened positive for Down syndrome and would need to go to the high risk pregnancy center at Wash U for further testing and to talk to a genetic counselor.
That appointment happened relatively quickly, but the intervening days were miserable and confusing. Of course I did as much internet research was possible during that period, learning, as I did so, that “screening positive” did not guarantee that my baby would have Trisomy 21.
Indeed, as the genetics counselor later told me, given the results of the blood test my risk was only 1 in 221. Still a relatively small risk! She took medical histories from my husband and me, then told us not to worry.
“Everything is going to be fine,” she assured us. “You’re young and healthy. This is just a false alarm.”
Then we walked across the hall for the Targeted Ultrasound, where the technician was great. Then the perinatal specialist came in. He had a quiet, reassuring voice, and he did a good job of telling us about our daughter’s heart defect and other “soft markers” for Down’s. He was also very accessible to me and my frantic phone calls over the next several days.
After meeting with him, I went back to see my own OB. Unfortunately, the two doctors hadn’t had a chance to touch base, so I had to relay all the information to her, though I was a hormonal sobbing mess.
She reminded me that she’d encouraged me to have the quad screen even earlier – I think she was worried that I might be litigious – then said what I considered to be a very professional and appropriate thing. “This is the last day that you could legally terminate in the state of Missouri,” she said. “But if you do decide to go that route, please come to me. I’ll make sure that you are referred somewhere safe in another state. I don’t want you to try to take care of this on your own.”
Later, I did mention to her that the worst part of my experience was hearing on the phone at work, “You’ve screened positive for Down syndrome” from a medical assistant. The doctor was adamant that they always share the specific results, but then, it wasn’t she who actually made the call. And it’s possible that the medical assistant did say something about a “screening test” being different than a “diagnostic test,” though I didn’t hear much after “You’ve screened positive,” so I can’t be sure. And I know that I didn’t hear the specific results until we met with the genetics counselor.
Throughout my pregnancy, the nurses and medical assistants encouraged me to bring my baby when I came back for my 6-week check-up after delivery so that they could ohh and awww over her. “We love seeing the babies,” they said. The second worst part of my experience was that the doctor didn’t look at my beautiful baby once. The nurses and medical assistants didn’t ask to hold her during my exam. Nobody showed any interest in her at all, and I felt like they thought she was damaged. This wasn’t the road I’d expected or hoped to travel, but this child was mine, and I loved her so much. This bit of rejection was painful.
The third worst thing about my experience was the false hope held out to my husband and me by the genetics counselor. I appreciated hearing the science, the odds, the unlikelihood. But I wish she hadn’t been so adamant that everything was fine; it just made finding out that much harder and more shocking.
Still, in retrospect, I think I was lucky. I got to find out about my baby’s diagnosis in time to prepare myself and assemble a great medical team. I got to read some books about babies with Down syndrome and look at pictures. I got to decide, to CHOOSE to have her. I got to change the hospital at which I intended to deliver, to be closer to a children’s hospital. I got the best medical care and advice I could have gotten.
But it could also have been a bit more sensitive.