Disturbing Trends

There have some couple of very disturbing trends in the world of Down Syndrome:

• 92% of women who receive a prenatal diagnosis of Down Syndrome for their unborn child choose to terminate the pregnancy.
• Mothers in the US who received such a diagnosis and chose to continue their pregnancy indicated that their physicians often provided incomplete, inaccurate and often offensive information about DS.
• In a survey conducted in 2004 of 2500 medical school deans, students and residency directors in the US, 81% of medical students report that they “are not getting any clinical training regarding individuals with intellectual disabilities”, and 58% of medical school deans say such training is not a priority.
• In a questionnaire completed by 532 ACOG (American Congress of Obstetricians and Gynecologists) fellows and junior fellows in 2004, 45% rated their training regarding how to deliver a prenatal diagnosis as “barely adequate or nonexistent” and only 28% felt “well qualified” in general prenatal genetic counseling.

I don’t think these are disconnected.  I’ve talked to so many parents of children with DS and so many who received a prenatal diagnosis report that the doctors were pretty emphatic about urging them to terminate the pregnancy.

I want to make it clear that I am not judging parents.  To receive such a diagnosis is devastating to parents.  I would never presume to second guess what is an incredibly difficult family decision.  My concern is that parents are often making that decision with inaccurate information.

I also want to acknowledge that there are some excellent doctors that do a great job of educating parents after a prenatal diagnosis.

What concerns me most about this is that this is a perfect storm.  Poor training leads to poorly equipped physicians.  Poorly equipped physicians give bad information to scared parents.  And scared, misinformed parents are terminating their pregnancies.  This is a predictable sequence.

But beyond the statistics are people.  Thousands of them.  Little people that will never have a chance to learn, love and live.  It breaks my heart.

Gabby’s birthparents could have chosen to terminate her life.  I praise God that they made a decision to let her live and put her up for adoption.