Monday, March 21, 2016

Women Deserve the Truth about Down syndrome and Pre-natal Testing

In an age when we value informed consent and patient centered care, it’s a travesty that often the worst informed patient is the mother of a unborn baby with special needs. Everyone she meets in her medical office seems to be telling her what she should do. In what is often a lonely and frightening time, she needs the truth about her options for testing and about the future of her baby and seldom hears it.
A frequently heard comment from such mothers is, “I felt pressured to test by my doctor.” Some women even report having prenatal blood tests done without their consent. If a test shows an increased risk for a pre-natal diagnosis, they often feel coerced by their doctors to abort. Some expectant mothers have even changed obstetricians late in pregnancy to preserve their peace of mind and good medical practice. Defenders of this practice credit defensive medicine for this, since obstetricians fear so-called “wrongful birth” lawsuits where an obstetrician is sued for failure to give the mother a prenatal diagnosis and the chance to abort her baby. An Oregon couple won a $3million suit for wrongful birth in 2012.
Regardless of lawsuits, women deserve the dignity of informed consent. They need to know the risks of prenatal tests and what can be done if their child is found to have a disability.  At this time, the answer is often nothing more than, ‘help prepare you emotionally.’ Too many doctors consider the birth of a child with a disability like Down syndrome a failure of their patients, due to outmoded stereotypes of life with Down syndrome.  Mothers hear such unmedical predictions as, “Your child will never tie his shoes, read, marry, go to college or be happy.” There is a wide range of ability among those with Down syndrome, however none of these predictions can be definitively tied to a prenatal diagnosis, and people with Down syndrome are breaking these barriers every day thanks to advances in inclusion and education. 
Then there is the question of happiness. Some women  are given the mother guilt trip in reverse; “you can’t do this to your other children.” There is the fear of raising a child with Down syndrome alone in the dire warning, “your marriage will break up.” Neither of these predictions are substantiated by research. Dr Brian Skotko’s 2011 study in the Journal of American Medical Genetics showed that 99% of parents who have a child with Down syndrome report being happy with them and those with Down syndrome are no less happy.
A study shows that marriages with a child with Down syndrome actually have slightly increased longevity.
A 2008 study at Vanderbuilt University analyzed data from the Tennessee Department of Health's birth, hospital discharge and divorce database records from 1990 to 2002. Down syndrome actually gave families what they termed, the “Down syndrome advantage.”
Rates of divorce:
  • Down syndrome – 7.6 percent
  • No disability – 10.8 percent
  • Other disabilities – 11.2 percent
Mothers are seldom told of the 1% risk of miscarriage from CVS and amnio-centesis. They are not given a realistic picture of what raising a child with Down syndrome is really like, and sometimes it’s hard to believe that this is not intentional. An abysmal ignorance exists in society about day to day life with people with Down syndrome, due to a high abortion rate of such babies  diagnosed with Down syndrome before birth  (between 75-92%)
This is where an array of parents of children with Down syndrome, have, from their computers, made an enormous difference in educating the public by sharing their day to day lives, publishing research and protesting negative stereotypes. These parents are making a difference in how both Down syndrome and  prenatal testing are viewed. Even the Journal of the American Medical Association is suggesting that women be given better counseling about prenatal testing. A study which showed that the number of expectant moms who chose to undergo invasive testing was halved when they had a short explanation of what testing was and what it could show them about their baby at their stage of pregnancy.

The conclusion was that the research,  “adds support to the contention that women may not be receiving adequate counseling about their options. This underscores the need for clinicians to be clear that prenatal testing is not appropriate for everyone, and to present foregoing testing as a reasonable choice.”
Well done, moms, keep it up, they are listening!

Friday, March 18, 2016

How having a child with special needs helps me work to overcome the deadly sins

1.   Humility against pride- I try to have a normal outing to the grocery store, chatting about nothing with the teenage clerk, when suddenly a bottle of Five Hour Energy goes flying past her head. She flinches and I have to reprimand Christina and apologize, catching another potential missile before it launches. Let’s not talk about the time she toppled the entire paper towel pyramid by ramming my shopping cart into it! Yes, I have a reputation in my town as a lousy parent.
But I do know that our lives are in God’s hands and I remember to call upon Him more often. There was a time when I dared not bring Christina out in public, she would flop on the floor and I wasn’t capable of lifting a 100 pound kid.
2.    Kindness against envy- I have no room to judge other parents as for their unruly children. I tend to sympathize with others whose lives are out of control when I would once judge them.  There is a saying about special needs moms, you say I have my hands full, but you should see my heart!!
3.   Abstinence against gluttony- Last September, I was obese with declining health,  when I realized I might not be around much longer to care for my 14 year old daughter. It scared me into joining an online Catholic lifestyle group called Wendy’s Wellness Warriors. I lost 40 pounds, and threw out my insulin. Last month, my doctor shook my hand when my great lipid blood results came in, saying, “Keep doing what you are doing!”
4.    Patience against anger- tonight two drinks were flung at me during the Lenten fish fry at our parish. One was red juice. Christina looked at me for a reaction. I held my peace and silently cleaned up the mess. This is NOT the mom I was 14 years ago!! Watching her halting progress and seeing her overcome huge obstacles, I learned not to sweat the small stuff. Besides, behavior which elicits a reaction, however negative, is often repeated.
5.   Liberality against greed- so many people have been so good to us, we have learned to accept generosity with gratitude and to give when its needed. No prideful one-upsmanship for us, we are too busy keeping a lid on things!
6.   Diligence against sloth- Keeping a home, home educating a young lady with Down syndrome, attending multiple therapies across the state, being a member of two board of directors, and working as an advocate for those with Down syndrome has taught me not to waste time.