My personal feelings are I would
NOT do this new
Noninvasive Prenatal Test for Common Fetal Aneuploidies if I were to be pregnant again. There are too many managed care systems (whether medical groups, hospital or paternalistic attitudes) that go into play when they know your child has
what some determine a futile to treat medical condition.
(the original title was: Sequenom test for Down syndrome & Trisomy 18 gives pregnant women wrenching choices in nation polarized over abortion
sandiegobiotechnology.com/topics/2607/sequenom-test-for-down-syndrome-trisomy-18-gives-pregnant-women-wrenching-choices-in-nation-polarized-over-abortion )
- noticed the title of this article has been adjusted
3/2013 new title is...
Test for Down syndrome & trisomies
gives wrenching choices click on title for original article.
Edited in March 2016,
I have the PDF of this as they've now removed this entire quote.
A quote under a photo, within a biotechnology article
“The growth of prenatal genetic testing is creating an even larger number of situations in which pregnant women must prepare to say their good-byes all too soon,”
The test which is currently available in more than 20 large metropolitan areas in the U.S., can be performed as early as 10 weeks’ gestation. At-risk pregnant women are seeking the test even though the results will inevitably put more of them in the position of making heart-wrenching personal decisions in a national political climate sharply polarized over abortion rights.
MUST? really MUST, thats a bit scary, thankfully we are NOT YET at a point where its mandatory women take this test within insurance programs. - Women have a choice to take this 10 early week test, bringing the early test results into their prenatal journey. Is this where National Health Care and or Prenatal Palliative Care is going? Ethically, I URGE you to - Be WISE, Get Well Informed, Do your own homework, this is Your Child, Your Family, Your Choice.
****************************************************************
Knowing what I know after years of Trisomy Support with hundreds of families, I would urge families to consider - first, - If You would not abort, than why cause yourself added Prenatal Stress. Once a Prenatal Diagnosis comes into play, Managed Health Care begins. While some Families share amazing support stories, others do not. Families have shared all sides of this Trisomy life journey online websites as well as the
SOFT USA site. Personally, I am so very glad I did not know prenatally and glad my child was whisked off to NICU with the visual at her birth of the extra pinky's and cleft lip. She was given appropriate newborn care with oxygen. We made choices from there with a supportive team of Professionals that I have adjusted over the years, as needed.
Today we have a wonderful (full trisomy 13) child who blesses our life each day. Each Trisomy child is so very different, these tests lump them into a category which would send any new family into the fears of the unknown. Making permanent and sometimes choices they regret. In all reality, Natalia has had 98% of the listed expected trisomy medical conditions, she would be what some would term, 'most severe case,' as she is full trisomy 13.
There are many variations of the medical conditions and no one knows how long each child will live. There are some very serious medical conditions
(cyclopia, proboscis, CDH Congenital diaphragmatic hernia and
Tetrology of fallot and some other serious heart conditions) that MAY only offer you a short time with your child, however, in recent years
trisomy children have been getting the heart surgeries including surgery for those with Tetrology of fallot. Be sure to contact the
SOFT Surgery Registry
When approached about a surgery SOFT provides:
- Total numbers for specific surgery
- Diagnosis of children who had the surgery
- Reported outcomes
- Name of hospital and surgeon name, if available
Sometimes the Blessings of the Unknown are
more Blessings than you could possibly imagine for your family. Trust in our Good and Wise Lord, he will offer you the Graces needed for this Life Journey. That is the good news... Statistics show that the families who reach out to
online trisomy medical support and then through resources find local support,
emotionally manage better with the many stages and the emotional cycles of this trisomy life journey. SOFT Support Organization for Trisomy 18, 13 and Related Disorders and the many FACEBOOK support pages within Trisomy Advocacy Support.
Should pregnant women be offered genome screening for their unborn baby?
I believe soon, very soon, we will begin to see stories of families
who have done this early 10 week non-invasive test, only to choose to continue to carry to term a child with a poor prenatal diagnosis...
Eventually we'll hear stories of the extraordinary pressures in some cases to terminate using medical professional terms such as: medical need, abortion, abort the pregnancy, elective termination (elective tx), fetal reduction, feticide, interruption of your pregnancy, interrupt pregnancy, late termination of pregnancy (TOP), selective and early induction,
prostaglandin stillbirth, selective fetocide, therapuetic abortion, termination for medical reasons, saying goodbye early....
Others will share the Blessings of these precious kids, the moments the possibilities. SOFT Family Stories
SOFT has been supporting Trisomy Families for 33 + Plus years
For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org
Yesterday we ran a story by Alex Schadenberg which reinforced something we know to be true but is not widely understood: That most parents of children with Trisomy 13 or Trisomy18 conditions (in this case Canadian parents) consider their child to be happy and found that their lives were enriched by the child. He drew that conclusion based on the results of a study published in the current edition of the Journal “Pediatrics.”
