well, quite honestly I ID decline newborn screenng (almost) altogether, and I have no regrets.


fourteen eyars ago when my baby was born, there was no swabbing for sampoles; it was done by heelstick. my baby was born pretty oninterventively at home with a midwife (I;d go even less medical had I the birth to do over, but thatls 'cuz I;ve become pretty hardcore!)

ayway, I agreed to the four-part newborn screen they do in California where we live, and I rgretted it as soon as they took my peacefully sleeping 6 day old infant baby who had nver been hurt medically (or otherwise) in any way and stuck her heel to get a blood sample. it didn;t flow freely and they kept squeezing her ankle with a lab aide saying, almost shouting, "you have to BKLEED, come on bab!" sdhe screamed and screamed and I burst into tears and knew I ahd betrayed my own principles.

I knew it was highly unlikely that she had any of the genetic diseases for which they were screening...their incidence ranged from one in 1600 to 1 in over 4000 if memory serves me right...and they are all autosomal recessives, I believe, which means that while it;s POSSIBEL that they have been silently heterozygous for generations, unlss there is some past history on noth sides of the family of oneof these diseases...pretty unlikely. and frankly I trust my intuition at this point (I also ahve a fair amount of ehalth training) to feel that if I really was concerned about something being wrong, it would be for good reason, and in the absence of that...why torture my baby and myself?


I had the tests done not so much ebcause I thought I "Should" for any medical reason, but because after this great homeborth, I;d brought my baby in to see a doctor when she;d had some trouble with breastfeeding and got a bot dehyfrated, and I as paranoid enough (which is a form of overriding one;s inttution,r eally) to think the hospital was going to hassle me as an "alternative" type mother anyway who;d insisted on homebirth that I;d better comply wioth their regualtions. Ido have a fear of hospital social workers and otehr busybodies thinking they are doing the right thing by contacting CHIld Protective Services when someone deviates from their understanding of proper new parent behaviorm, whether it's eclineing prenatal testing and hospital birth, which I did, or using botanical remedies.

anyway, it was a traumatic excpedriece for me but it taught me a lot about where my values are really at, and I made a priomise to myself and my baby never to subject ehr to that kind o paion unless I felt there was a really good reason. (e.g., that her life or well being was in danger if I didn;t.) this didn;t qualify.

so the doctor called me back a week later to say that they had vlurred the blood test and it couldn;t be read well and they wanted to repeat it. it made me nervous to stand up to her, but I declined. I told the doctor I had attended public health grad school and was planning to continue (all true) and that I ken w it was another way of looking at things, but I felt pretty satisfied that my child was not in danger of any of those genetic diseases, and besides I feel that much of our insistence on these tests is our fear of people with developmental delays, and that I;d been a teacher and counselor and family member of developmentally delayed chid;lren and adults and I didn;t see their existence as a tragedy to eb avoided at all costs - in fact they wre my friends (and in one case my cousin.) the physician chewed me out a little, but I stood my ground.

every state seem to have slightly different tests they run or slightly differnt laws concerning how they are done, whioch to me makes me feel their "necessity" is open to discussion since not every public health department agrees that they are all needed!

a week or two later I had a tak with the haed lab technician, a really kindly woman who heard me out and said that Iw as clearly a thinking person, that she was a mother of three children ehrself, and that while I was ":more alternative" inher words than she, she respected my reight to make the choices I considered best for my child and that she understood why I would not want the procedure repeated. since there is no birthing facility at the branch of our HMP where I got my care, they are not that familair with working on newborns and maybe they need a little more sensitivity to how families feel pressured, or not.

I'm not telling anyone NOT to screen their babies, but sometimes I tihnk wel;ve gone overboard with all our tests in this generation.