This week’s blog is about Buffy 's testimony to the Indiana House of Representatives Health Committee to encourage
health facilities and health care providers to give information to parents who
receive a prenatal diagnosis of Down syndrome or any other condition upon
testing…
“On
March 30th 2012 a mother had an appointment with maternal fetal medicine. She
had been given a probability of 1 out of 9 chance of carrying a child with Down
syndrome. After two hours of lying on a table, looking at the ultrasound
screen, the young doctor said, “If I squint really hard, I can pretend to see a
nasal bridge.”
There
are soft markers and there are hard markers for determining if a child has Down
syndrome. A small or absent nasal bridge is considered a soft marker, and in
most studies it is not even considered a noteworthy marker at all. After a
moment of silence, and a few moments spared between the mother and the father,
the doctor abruptly walked back into the room, looked into her eyes, and
without consent began telling her about serious health implications, lifelong
therapies, a grim outlook for education, and what seemed to paint a picture of
a terrible prison sentence. The mother asked if he could please stop and excuse
himself from the room. She began to have thoughts of abortion. Immediately,
abortion needed to happen—because there is no way this child will ever be
happy, this mother will never be happy, this father will never be happy. This
must have been equivalent to losing a child—a child that did not fit the
description of the posters hanging in the doctor’s office.
90 percent. 90 percent of mothers probably have those same thoughts. That is a
safe assumption because roughly, 90 percent of mothers that receive a prenatal
diagnosis terminate their pregnancy.
This mother, however, did not abort. She spent the remainder of pregnancy
living in a silent hell. She often thought of adoption. She often thought
thoughts that only God will know. She delivered her baby prematurely. A team of
doctors whisked her four-pound baby away before she could feel her child’s skin
against hers. No one said, “Congratulations on the birth of your beautiful
baby!” In fact a leading neonatologist at the leading children’s hospital said,
“You know, these children, well, don’t ever get your hopes up for her.”
I
am this mother. Once my little girl, Ella Grace, was born, I vowed to make
certain one day women would no longer carry the burden that I carried. I stand
before you today because I am pleading for every unborn child whom carries a
47th chromosome or any other disability for that matter. It is our duty as a
just society to allow mothers and fathers the true freedom to understand that
they are not alone. I am among many who will lovingly open my heart and wrap my
arms around someone new into this community. That is the picture that I want
healthcare providers to paint.
When
someone receives a diagnosis of cancer, heart disease, or any other type of
illness, all treatment options are discussed, and treatment ensues
aggressively. A prenatal or postnatal diagnosis of Down syndrome should not be
biased based upon fears of the unknowns, but celebrated based upon the knowns.
I
am respectfully asking your consideration to allow that all resources, be it
education, monetary, support, community outreach, healthcare advances, and life
expectancy be disclosed to every parent that receives either a prenatal or
postnatal diagnosis of Down syndrome or any other disability.
I
want to sincerely thank you for your time and considerations. God bless.”
Buffy, thank you for sharing your
story. If you believe that accurate and up to date information should be handed
out about Down syndrome, please write to your Indiana Representative today and
let him or her know your thoughts. You can find your elected officials by clicking this link:
http://cqrcengage.com/thearc/app/register?0&m=9899 and then filling out the
window on the right hand side of the screen.
