As she tenderly expects the birth of her second child, Amy Julia Becker contemplates the 26 months she has had with her first baby, and the joy and surprises that came with Penny. Becker, like most DS mothers, was only given negative information about Trisomy 21 when Penny was diagnosed.
I wish that “evidence-based standards of care” included the fact that the life expectancy of people with Down syndrome has doubled in the past twenty-five years, or that the average IQ of a person with Down syndrome has doubled over the course of the twentieth century, or that many physical “defects” can be corrected relatively easily because of advances in medical care.
She goes on to mention the joys and triumphs:
I wish it included not only a list of all the medical problems she could face, but also the joy she could bring and the abilities she could have. I wish it included the stories I learned many months after she was born, stories about kids and adults with Down syndrome who played on Varsity teams in high school, competed and won national art competitions, swam across Lake Tahoe.
This is similar to my own experience. Almost every mother I talk to is surprised by the joy that her child has brought to her life. There is almost nothing in the standard DS literature provided by OB/GYNS which anticipates this life-changing joy. Why don’t physicians give this information to parents? Instead, being informed in a post-natal diagnosis is more like this:
After giving birth, there is stillness in the delivery room. The nurses seem to avoid you. Finally, maybe several hours later, the doctor tells you what is wrong. “Your baby has Down syndrome. Try not to let it ruin your life.”
The only difference in the prenatal diagnosis is the insistence on immediately scheduling the presumed abortion. The result of this barrage of negative information? The vast majority of women who are carrying a baby with Down syndrome decide to abort. No woman really wants to kill her baby, but women abort because they don’t believe they have a choice. The alternative of a “ruined life” is too terrible to contemplate.
This petition relates to the issue as well. I have been unwilling to sign the petition because it tasks the NDSS and the NDSC with developing education programs for positive prenatal diagnoses; I have yet to hear a clear statement from either of the national DS organizations deploring abortion of babies with Trisomy 21. I don’t trust them on this issue.
Filed under: attitudes, Positive attitude Tagged: | diagnosis of Down syndrome, Prenatal diagnosis
