Thursday, July 31, 2014

Why argue about the percentage of unborn babies with Down syndrome aborted?

Down syndrome advocate and mom Amy Truesdell Becker, recently wondered on her blog Thin Places on Christianity Today why the incorrect statistic that 90% of unborn babies prenatally diagnosed with Down syndrome are aborted us still used. There are new statistics which claim that 'only' 75% of those babies are aborted when diagnosed prenatally with Down syndrome. That means if you have an extra 21st chromosome you have only a 50% chance of making it out of your mother's womb alive.
The history about the 90% statistic is the following; it came from a Wall Street Journal article in which Dr Brian Skokto was quoted. It was read by then Senator Sam Brownback who then went on to introduce the Kennedy-Brownback Bill which required that expectant parents of babies with Down syndrome be offered up to date information on what life with Down syndrome was like. It passed both houses of Congress and was the last piece of legislation Senator Kennedy sponsored, a rare moment of bi-partisanship, which I commemorate here.
So, this bill and the resultant fame of the 90% statistic was the first effort to overcome widespread societal opinion that people with Down syndrome are better off dead. Sadly the legislation was passed as the Obama Administration took over, and HHS Secretary Kathleen Sibelius never funded it, with the required $5million needed to provide informational pamphlets to doctor's offices. So now the effort is going from state to state like the recently passed Chloe's Law in Pennsylvania.
The effort has resulted in a lot of infighting about what  should be included in informational pamphlets as chronicled in painstaking detail in Mark Leach's article. The main objection to the attractive, bilingual Spanish Lettercase booklet was voiced by individuals with Down syndrome who were insulted that abortion was listed under options for parents whose child had been diagnosed prentally with Down syndrome. This became even more of an issue in 2011 when a new blood test for Down syndrome MaterniT21 was released by Sequenom, raising the stakes as potential thousands of parents who would not be tested might now request the non-invasive highly accurate maternal blood test available at around ten weeks gestation.
So the ninety percent statistic is no longer relevant but it may be replaced with far more ominous one as more parents opt for this new testing. Amnio and CVS are invasive and fairly late term tests, occurring at 16 weeks with an few weeks till results are available.  Although MaterniT21 is only a screening test, and is not considered a diagnostic test, Dr Skokto has voiced concern that it will be used as a diagnostic test, and raise the current statistic of babies with Down syndrome who are never born.
All this could have been avoided if in 1959 when Dr Jerome Lejeune's team discovered that an extra 21st chromosome was the cause of Down syndrome, the information was used to improve the lives of those with the condition. He meant for his discovery to provide an avenue for research into prenatal treatments to diminish the effects of the extra chromosome on the developing baby.  Instead the karyotype of Down syndrome was combined with amnio to perform the first prenatal test and the method of search and destroy pre-natal testing was born. Eugenics took a leap into a brave new realm of science. Abortion was not widely legal in the US, however, abortion of babies with Down syndrome was more acceptable to the American public who saw the lives of those with Down syndrome at that time largely lived in neglect in state institutions as miserable. Mothers of a certain age were encouraged to abort merely based upon statistics that they might be carrying a baby with Down syndrome. So the prenatal test was touted as lifesaving, the very same claim made by Sequenom for MaterniT21. It will save babies lives.
In fact, Down syndrome was the abortion wedge issue of the 1960's. Those who would not approve of abortion of typical babies did approve of abortion for babies with Down syndrome. But Dr. Lejeune spent his life trying to undo the great harm caused by misuse of his discovery and died in 1994 regretting his failure to come up with a cure, which he insisted was necessary to save their lives. "In order to save them, we have to cure them. The task is immense, but so is hope."
Today, according to an article by Lejeune USA president Mark Bradford no fewer than five clinical trials for treatments to greatly improve the lives of those with Down syndrome are in progress, a testament to Lejeune's legacy and advocacy by parents like Rep Cathy McMorris Rodgers, (R-WA) mother of Cole a young man with Down syndrome and founder of the Congressional Down Syndrome Caucus. The Congresswoman has advocated tirelessly for more research funds for Down syndrome and with leadership growing in the Down syndrome community from groups like Keep Infants with Down Syndrome and Saving Downs the future does indeed look hopeful and terrible stats like 90%, 75% or 50% will be a distant memory. Because even one death due to one's unique chromosomal structure is one too many.

Thursday, July 17, 2014

Living with the Unthinkable; leaving your child to die in a hot car

As the mother of a twelve year old girl with Down syndrome, Christina's safety has always been my primary concern, and too often my obsession.
 . . . sometimes I have to put in a load of wash or get involved in yard work, look up and Christina is gone. The house is eerily silent, and she does not answer my panicked calls. It last happened on Sunday, in the dark, and she was found in the car in the driveway, waiting to go pick up Bella from youth group. Most times it is something normal which any other ten year old could do without freaking me out. But Christina is NOT a normal ten year old and stories like this terrify me.
 News that a child with Down syndrome like Christina has died in an auto accident as she wandered from her home in the middle of the night sets off my inner terror. So I put up extra high fences with locks around my property on a quiet country road, and changed all the door locks so that Christina could be locked in and allow us to sleep in peace knowing that this probably will not happen to us.

Recent news events have made me very grateful that my daughter's tendency to wander and her inability to be left alone for long periods has made me a super-vigilant parent. I don't have the luxury of being distracted very often. I must know where she is at all times, and rarely leave her with a babysitter who is not a family member. Its difficult to supervise someone that closely at age twelve, when she, an adolescent, pointedly slams the door in my face to get some privacy, yet it makes me feel that a certain type of agony is less likely to happen to me.

 I don't know if I could ever recover from the horror of finding that I left my child to die an agonizing death in a hot car.

When I read the multiple stories of such deaths in the news this summer, I wondered how parents could be so forgetful or careless that they forget their child, and then I remember that two of the holiest people who ever lived, St Joseph and Our Lady, left a twelve year old behind in Jerusalem.  Surely such holy parents were not guilty of sin, but Mary was most likely thinking that Jesus was with the company of men, and St Joseph was sure He was with His mother. Its a familiar scenario to even an obsessed mother like me.

 It happens to the best parents who misunderstand one another, who are overburdened with work schedules, or a large, disorganized family.  It happens to parents who share custody and are not accustomed to caring for their child, and it happens to parents whose motives are questionable. 

The real questions we need to be asking are:

1. How to prevent this tragedy from happening
2. How to help grieving parents.

There is a novel written after the author, Michelle Buckman read such a news article, and pondered for some time what sort of agony the mother who left the toddler in the car endured, and how she regained her sanity. Rachel's Contrition 
is a wrenching novel about Rachel's grief after leaving her child in  a car, and how it hurtled her spiraling downward into near insanity. She was delusional, almost catatonic and lost her home, her husband and custody of their son. She had nothing to live for as she slept her days away in her friend's guesthouse, visited only by her wraith-like, disturbed teenage daughter.

Rachel's Contrition shows how deep is the suffering that these parents endure, and how futile it is to expect them to recover in a short period of time regardless of how many children remain in their care.
The novel  reveals how help can come from the most unlikely of places, which gives the reader hope, how the grace of God, through His friend St Therese of Lisieux, reached into the pit of despair in which Rachel found herself and offered her a way out. 
When it was published, it rocketed to the top of Amazon's list of books for women, and rightly so, as its power and impact are unforgettable. If you like me are puzzled and disturbed by this rash of terrible events. and want to know how you might survive such a tragedy, this book is a riveting read and a consoling companion in this dark journey.