Thursday, February 12, 2015

Buffy's Story

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.

No comments:

Post a Comment