Preacher Shane in his blog:
Our c-section was scheduled for 10:15 yesterday morning but Michael had other plans and decided to come early. He was born at 7:09 am weighing 4lbs and 0 oz 16 3/4 in long. He is now facing a great battle with all the health issues and medical personnel that are less than willing to give him a fighting chance.
Michael's heart troubles are different and more serious than what we thought. He will require heart surgery before he can go home, but he is too small for surgery right now and they will have to do surgery on his intestines before they can do the heart surgery. Right now he is not stable enough for any type of surgery. Please keep him in your prayers.
***My note: notice what happened here. The doctors said that the baby wasn't stable enough for surgery. What they didn't say is: this water fountain isn't for you/get in the back of the bus/you don't get health care because of your genetic matter.
And yes, I'm making that statement. If you want to debate me on this, bring it on. Let's end discrimination in this country against those who are weakest and need our help the most.
Showing posts with label healthcare. Show all posts
Showing posts with label healthcare. Show all posts
Saturday, April 04, 2009
Thursday, April 02, 2009
A Great Enough Comment To Post
Back in 1964, (the dark ages of neonatology, if it even existed as a specialty) 10% of babies with tri 18 lived past a year and 1% past ten years.
Today, the statistics have worsened, not improved, despite incredible advances in neonatology.
In 1981, a geneticist put out a call in the Am Journal of Genetics for all cases of tri 13 or 18 in which the children were older than 10 yrs of age. Imagine that!! He wanted to understand why some kids die young and others don't. That was smart thinking!
Then genetic testing and termination advanced. The most recent article about trisomy 18 (last summer) states that is is "unethical and contrary to the child's best interests to resuscitate a new born with Trisomy 18 for whom a cardiac condition has been detected prenatally." Imagine that!!
The article (published in a major journal called Pediatrics), went so far as to say that any neonatologist who resuscitated was acting based on the parents demands and contrary to the chld's best interests.
What is interesting about it all is that what is clearly a judgment on quality of life has, over the decades, worked its way to disguise itself as a medical definition.
The following article, written by leading American MD/EThicists (and heroes, in my mind) explains it well:
http://livingwithtrisomy13.org/Koogleretal.pdf
In this video, a man describes having to fight for his daughter's life (trisomy 13) when the staff covertly tried to allow her to die.
She is now a beautiful 7 year old walking independently thanks to the efforts of her family.
http://www.youtube.com/watch?v=UNzJt8fbavo&feature=related
Barb
www.anniefarlow.com
Today, the statistics have worsened, not improved, despite incredible advances in neonatology.
In 1981, a geneticist put out a call in the Am Journal of Genetics for all cases of tri 13 or 18 in which the children were older than 10 yrs of age. Imagine that!! He wanted to understand why some kids die young and others don't. That was smart thinking!
Then genetic testing and termination advanced. The most recent article about trisomy 18 (last summer) states that is is "unethical and contrary to the child's best interests to resuscitate a new born with Trisomy 18 for whom a cardiac condition has been detected prenatally." Imagine that!!
The article (published in a major journal called Pediatrics), went so far as to say that any neonatologist who resuscitated was acting based on the parents demands and contrary to the chld's best interests.
What is interesting about it all is that what is clearly a judgment on quality of life has, over the decades, worked its way to disguise itself as a medical definition.
The following article, written by leading American MD/EThicists (and heroes, in my mind) explains it well:
http://livingwithtrisomy13.org/Koogleretal.pdf
In this video, a man describes having to fight for his daughter's life (trisomy 13) when the staff covertly tried to allow her to die.
She is now a beautiful 7 year old walking independently thanks to the efforts of her family.
http://www.youtube.com/watch?v=UNzJt8fbavo&feature=related
Barb
www.anniefarlow.com
Monday, March 30, 2009
Kathleen's Story
"We have been told that her hernia is fixable, but that because she has a Trisomy 18 diagnosis, there isn't a doctor out there that will touch her. "No doctor will touch her." Straight out of not one, but three doctors' mouths! "
**THIS IS HAPPENING TODAY, IN OUR COUNTRY. WHAT ARE YOU GOING TO DO?**
From Kathleen:
My name is Kathleen. I am 36 and I have been married to my husband Dusten for almost 13 years. We live in Fort Worth, TX have three beautiful girls, ages 7, 4 and 20 months. Dusten is a firefighter/paramedic and I am fortunate to be able to stay home to be a mommy to my kids.
**THIS IS HAPPENING TODAY, IN OUR COUNTRY. WHAT ARE YOU GOING TO DO?**
From Kathleen:
My name is Kathleen. I am 36 and I have been married to my husband Dusten for almost 13 years. We live in Fort Worth, TX have three beautiful girls, ages 7, 4 and 20 months. Dusten is a firefighter/paramedic and I am fortunate to be able to stay home to be a mommy to my kids.
I had never heard about Trisomy 18, or any trisomy for that matter until we were given our diagnosis. Our OB/GYN's office had called, telling me they wanted me to come in and talk to the doctor. We live about 30 miles away and I told her that I would rather talk to the doctor on the phone, that the nurse was scaring me. After quite some debating, she put our doctor on the phone.
She informed us that our blood screening came back positive for Trisomy 18, and that was serious. She told us she would schedule an appointment with a neonatologist who would conduct a more specialized sonogram. Our OB/GYN told us we needed to start preparing ourselves for what lies ahead, and that even though a positive screening result doesn't confirm a diagnosis, it still could have a negative outcome.
She informed us that our blood screening came back positive for Trisomy 18, and that was serious. She told us she would schedule an appointment with a neonatologist who would conduct a more specialized sonogram. Our OB/GYN told us we needed to start preparing ourselves for what lies ahead, and that even though a positive screening result doesn't confirm a diagnosis, it still could have a negative outcome.
At 24 weeks, the very next day we went for our specialized sonogram. Before going in, a genetic counselor tried to tell us a little bit about Trisomy 18 - what it meant and what markers the doctor would be looking for. She also suggested that most people terminate their babies if they are found with a positive diagnosis. We were scared to death to the say the least, all before even going into the sonogram.
The doctor found many of the markers associated with Trisomy 18: cysts in the brain, a hole in the heart, a diaphragmatic hernia, and clenched hands. With all of these markers present, a Trisomy 18 diagnosis was most likely positive, but we would only know for sure through an amniocentesis. We decided to to have that done, and would wait several days before finding out the results.
In the mean time, while waiting for the amnio procedure to be done, we went back to talk to the genetic counselor who told us that it was our choice to terminate the pregnancy or carry to term. If we terminated, she could put us in touch with grief counselors and such, but we if chose to carry on, she couldn't not offer any further help. I think this made me more furious and fearful than anything. I don't think my husband and I had ever felt so much alone.
The doctor found many of the markers associated with Trisomy 18: cysts in the brain, a hole in the heart, a diaphragmatic hernia, and clenched hands. With all of these markers present, a Trisomy 18 diagnosis was most likely positive, but we would only know for sure through an amniocentesis. We decided to to have that done, and would wait several days before finding out the results.
In the mean time, while waiting for the amnio procedure to be done, we went back to talk to the genetic counselor who told us that it was our choice to terminate the pregnancy or carry to term. If we terminated, she could put us in touch with grief counselors and such, but we if chose to carry on, she couldn't not offer any further help. I think this made me more furious and fearful than anything. I don't think my husband and I had ever felt so much alone.
Because I am a very positive person and because of my faith, I knew the only decision for me was to carry to term. We knew we might not make it to a full 40 weeks, but we would try and make it as far as we could.
Unfortunately, we have been surrounded by doctors, counselors, nurses and people in general who would rather wash their hands of this pregnancy and I have yet to encounter anybody who is willing to treat me and my daughter with a little compassion and treat us a human beings. My OB/GYN, my perinatologist, and then the neonatologist have all pushed us to terminate the pregnancy early on. They kept telling us that our baby would not be viable and that there would not be any quality of life should she be born alive. We even had the doctors calling us at home days before the termination cut off date, asking if we were sure that we didn't want to terminate.
And yet the whole time, we really weren't being told how to progress with our decision. Once our amnio results came back, I surely thought we would have another meeting with the genetic counselor to explain things further, to at least clarify which type of Trisomy 18 our baby had and what we should expect down the road. No such thing. The counselor said she couldn't help us or provide us with any other information. I even clearly remember that the sonographer told us not to research this diagnosis because there was too much false information on the Internet.
Unfortunately, we have been surrounded by doctors, counselors, nurses and people in general who would rather wash their hands of this pregnancy and I have yet to encounter anybody who is willing to treat me and my daughter with a little compassion and treat us a human beings. My OB/GYN, my perinatologist, and then the neonatologist have all pushed us to terminate the pregnancy early on. They kept telling us that our baby would not be viable and that there would not be any quality of life should she be born alive. We even had the doctors calling us at home days before the termination cut off date, asking if we were sure that we didn't want to terminate.
And yet the whole time, we really weren't being told how to progress with our decision. Once our amnio results came back, I surely thought we would have another meeting with the genetic counselor to explain things further, to at least clarify which type of Trisomy 18 our baby had and what we should expect down the road. No such thing. The counselor said she couldn't help us or provide us with any other information. I even clearly remember that the sonographer told us not to research this diagnosis because there was too much false information on the Internet.
I am the last person for a doctor to tell me what to do or not do. For the past couple of months my mother and I have been trying to research all that we can to see what is actually available for our baby girl. We have read the statistics and the stories about the deaths and lives of babies affected by Trisomy 18. Not all of them die! And it makes me wonder that if some of these babies had not been denied treatment, if the statistics would be different.
I fully understand that there is not a magical pill that will change the mental retardation part of this diagnosis, but no one can guarantee me the severity at which my daughter will be affected. I understand that my daughter may not benefit from certain procedures, but no none can guarantee me that she might not take well to them. Surgery may work for her, it may not, but not one doctor can guarantee me any kind of results. In my eyes, doesn't my daughter, doesn't every baby, deserve a chance at life?
We have been told that her hernia is fixable, but that because she has a Trisomy 18 diagnosis, there isn't a doctor out there that will touch her. "No doctor will touch her." Straight out of not one, but three doctors' mouths!
I have been told that our children's hospital here in Fort Worth has a pediatric cardiologist, a hernia surgeon, and a great NICU with ECMO that would benefit a healthy baby should they be born with the defects that my daughter has. However, because of her Trisomy 18, they will not operate on her.
I have been told that the hernia has pushed her stomach and digestive parts through her diaphragm, into her chest cavity, which is compressing her lungs and pushing her heart over to the side. If she is born alive, the first thing she will do is try to take a breath. With the compressed lungs, it will be hard, or nearly impossible for her to breathe on her own.
I have had 2 NICU nurses tell me that if a hernia surgery is to be performed, it has to be done right after birth, that my baby girl would need assistance in breathing until the surgery can be done. It is an immediate procedure. On the flip side, the doctors are telling me the best we can do is try to let our baby girl breathe on her own, that she will hopefully pass with peace within 30 minutes to couple of hours. They have told me there is nothing they can do, that Trisomy 18 is basically a death sentence and we can try to keep her warm and hold her as long as possible.
I fully understand that there is not a magical pill that will change the mental retardation part of this diagnosis, but no one can guarantee me the severity at which my daughter will be affected. I understand that my daughter may not benefit from certain procedures, but no none can guarantee me that she might not take well to them. Surgery may work for her, it may not, but not one doctor can guarantee me any kind of results. In my eyes, doesn't my daughter, doesn't every baby, deserve a chance at life?
We have been told that her hernia is fixable, but that because she has a Trisomy 18 diagnosis, there isn't a doctor out there that will touch her. "No doctor will touch her." Straight out of not one, but three doctors' mouths!
I have been told that our children's hospital here in Fort Worth has a pediatric cardiologist, a hernia surgeon, and a great NICU with ECMO that would benefit a healthy baby should they be born with the defects that my daughter has. However, because of her Trisomy 18, they will not operate on her.
I have been told that the hernia has pushed her stomach and digestive parts through her diaphragm, into her chest cavity, which is compressing her lungs and pushing her heart over to the side. If she is born alive, the first thing she will do is try to take a breath. With the compressed lungs, it will be hard, or nearly impossible for her to breathe on her own.
I have had 2 NICU nurses tell me that if a hernia surgery is to be performed, it has to be done right after birth, that my baby girl would need assistance in breathing until the surgery can be done. It is an immediate procedure. On the flip side, the doctors are telling me the best we can do is try to let our baby girl breathe on her own, that she will hopefully pass with peace within 30 minutes to couple of hours. They have told me there is nothing they can do, that Trisomy 18 is basically a death sentence and we can try to keep her warm and hold her as long as possible.
I can't believe that with all of today's medical technology and equipment, that doctors have the power to attempt to save lives, but that in my case, it seems like they have chosen not to help those who are less than perfect. I understand that my baby girl will have issues, and the she might not survive the fight in the long run, but doesn't she deserve a chance?
I feel like there are so many what ifs and there are so many kids who have been born with Trisomy 18 and have lived. Do the doctors not realize this? Do they not care? I know what statistics say, but I also believe that each case should be handled on an individual basis. All I am asking for is a chance.
All I want is my right as a parent to do what is best for my child, and I believe that giving her a chance is the one thing I can do, and perhaps that one thing that I can have control over. I have to try. Miracles do happen.
I feel like there are so many what ifs and there are so many kids who have been born with Trisomy 18 and have lived. Do the doctors not realize this? Do they not care? I know what statistics say, but I also believe that each case should be handled on an individual basis. All I am asking for is a chance.
All I want is my right as a parent to do what is best for my child, and I believe that giving her a chance is the one thing I can do, and perhaps that one thing that I can have control over. I have to try. Miracles do happen.
Tuesday, February 10, 2009
The Government Says: DNR
Reprinting this comment for you in case you're not a comment reader:
This blog entry is begging for my response.
My daughter Annie died at the age of 80 days within 24 hours arrival at a prestigious hospital in Canada. A DNR was written without our knowledge or consent. Lethal, unauthorized quantities of narcotics were removed from the cabinet under Annie's name. The final computerized medication report is inexplicably missing.
Annie had trisomy 13. Unlike many poor children born with this condition, Annie did not have the common brain or heart defects and she could see and hear. She died of a genetic label.
To this day, we do not know what was wrong or why she could not be helped. The Coroner determined the care was "not appropriate" and told us to go complain at the medical board or start a law suit.
Well....in Canada, the life of a child with disabilities barely approaches the cost of a lawyer just getting warmed up.
The medical board would not take action because it is not the doctor's fault: it is a health policy. Our hospital has a "no treat, terminally sedate" policy for trisomy 13/18 kids who land in the ICU or NICU.
Here is a video of a father from Canada describing how the director of the NICU tried to kill his daughter with Trisomy 13. (She is now 7, walking independently, and quite happy)
Annie's story is at www.anniefarlow.com
Things are worse in Canada....but it is changing in the US. We had NO CHOICE for life for Annie....even if we were willing to pay for all of the medical treatment ourselves. It was not an option because the whole time the doctors were pretending that they were "doing everything" and we believed that.
Kids with Trisomy 13 and 18 are at the forefront of the eugenics movement. It all starts with government policies based on quality of life.
Barb
This blog entry is begging for my response.
My daughter Annie died at the age of 80 days within 24 hours arrival at a prestigious hospital in Canada. A DNR was written without our knowledge or consent. Lethal, unauthorized quantities of narcotics were removed from the cabinet under Annie's name. The final computerized medication report is inexplicably missing.
Annie had trisomy 13. Unlike many poor children born with this condition, Annie did not have the common brain or heart defects and she could see and hear. She died of a genetic label.
To this day, we do not know what was wrong or why she could not be helped. The Coroner determined the care was "not appropriate" and told us to go complain at the medical board or start a law suit.
Well....in Canada, the life of a child with disabilities barely approaches the cost of a lawyer just getting warmed up.
The medical board would not take action because it is not the doctor's fault: it is a health policy. Our hospital has a "no treat, terminally sedate" policy for trisomy 13/18 kids who land in the ICU or NICU.
Here is a video of a father from Canada describing how the director of the NICU tried to kill his daughter with Trisomy 13. (She is now 7, walking independently, and quite happy)
Annie's story is at www.anniefarlow.com
Things are worse in Canada....but it is changing in the US. We had NO CHOICE for life for Annie....even if we were willing to pay for all of the medical treatment ourselves. It was not an option because the whole time the doctors were pretending that they were "doing everything" and we believed that.
Kids with Trisomy 13 and 18 are at the forefront of the eugenics movement. It all starts with government policies based on quality of life.
Barb
Is Caring For Zoe Appropriate And Cost Effective?
Last time I mentioned the threat that Universal Healthcare poses to kids like Zoe, one commenter mentioned "I hope that the patient's rights and wishes will be number one in the medical staff's decisions. I have faith in Pres. Obama. He is a father and has overcome a lot in his life. I believe he truly cares about ALL Americans regardless of race, religion, or financial status."
Another said, "Do you think those 50 million deserve health care less than Zoe?
Do you think God wants them to have less then Zoe? How lucky Zoe is to be born in to a family where you have resources even if they are not perfect, but really do you think some people don't deserve health care? It sounds like You think the draconian decision should be against the 50 million who are not you."
Fast forward to today, and the current "stimulus" bill that will soon be adopted into law. One of the stimuli that will soon be law, according to this op/ed in Bloomberg, provides for "medical treatments will be tracked electronically by a federal system. Having electronic medical records at your fingertips, easily transferred to a hospital, is beneficial. It will help avoid duplicate tests and errors."
My response: good to great. I observed physicans and nurses at the same hospital who weren't aware of what had happened in previous shifts or days or weeks. For sure, Zoe's pediatrician and the hospital sharing information would have been and would still be a great step forward.
But.
But then the bill goes on to establish a bureau to oversee those records. "One new bureaucracy, the National Coordinator of Health Information Technology, will monitor treatments to make sure your doctor is doing what the federal government deems appropriate and cost effective. The goal is to reduce costs and “guide” your doctor’s decisions."
Dr. Frommelt told us that Zoe's surgery - performed with care in a private health care system - was the discussion of surgeons and ethicists. What now? What if the decision is put in the same hands of the government that allows for and funds abortion, including late-term abortions?
Appropriate and cost effective would be to let the little girl with the death sentence die. I'll break it to her when she wakes up from her nap. On, stimulus! On!
Another said, "Do you think those 50 million deserve health care less than Zoe?
Do you think God wants them to have less then Zoe? How lucky Zoe is to be born in to a family where you have resources even if they are not perfect, but really do you think some people don't deserve health care? It sounds like You think the draconian decision should be against the 50 million who are not you."
Fast forward to today, and the current "stimulus" bill that will soon be adopted into law. One of the stimuli that will soon be law, according to this op/ed in Bloomberg, provides for "medical treatments will be tracked electronically by a federal system. Having electronic medical records at your fingertips, easily transferred to a hospital, is beneficial. It will help avoid duplicate tests and errors."
My response: good to great. I observed physicans and nurses at the same hospital who weren't aware of what had happened in previous shifts or days or weeks. For sure, Zoe's pediatrician and the hospital sharing information would have been and would still be a great step forward.
But.
But then the bill goes on to establish a bureau to oversee those records. "One new bureaucracy, the National Coordinator of Health Information Technology, will monitor treatments to make sure your doctor is doing what the federal government deems appropriate and cost effective. The goal is to reduce costs and “guide” your doctor’s decisions."
Dr. Frommelt told us that Zoe's surgery - performed with care in a private health care system - was the discussion of surgeons and ethicists. What now? What if the decision is put in the same hands of the government that allows for and funds abortion, including late-term abortions?
Appropriate and cost effective would be to let the little girl with the death sentence die. I'll break it to her when she wakes up from her nap. On, stimulus! On!
Wednesday, January 21, 2009
At The Doctor
For a regular checkup. I tried to move it to tomorrow, but that day wasn't open. In fact, the next open day was March 19! Makes you wonder what will happen when the 50 million uninsured are insured. How easy will it be to get an appointment? How easy will it be to reschedule?
And...will state-run healthcare allow for Zoe at all? We're blessed to find a bunch of doctors who see value in preserving Zoe's life, who don't see Trisomy 18 as the end. But, others have simply said or shown that her "death sentence" means she should receive different, less, or no treatment.
Think that will get better or worse with state-run healthcare? In other attempts to bring state-run care through time and history, the state had to make Draconian decisions about treating the elderly or dying to care for those who they deemed would live. Come to think of it, I'm glad Zoe and my Dad were able to experience a different healthcare for this part of their lives.
And...will state-run healthcare allow for Zoe at all? We're blessed to find a bunch of doctors who see value in preserving Zoe's life, who don't see Trisomy 18 as the end. But, others have simply said or shown that her "death sentence" means she should receive different, less, or no treatment.
Think that will get better or worse with state-run healthcare? In other attempts to bring state-run care through time and history, the state had to make Draconian decisions about treating the elderly or dying to care for those who they deemed would live. Come to think of it, I'm glad Zoe and my Dad were able to experience a different healthcare for this part of their lives.
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