Free Republic

I hope you take the time to read all of post #77. I did not think this site allowed personal attacks. Saying that I am not a “decent human being” when you do not know the circumstances is not fair debate. My husband and I happen to be the founders of the largest food pantry in our metropolitan area. www.missionfan.com. We have lots of support in our city and no one who knows us personally would ever make such an accusation. People here, including the social workers who visited our home, sided with us-not the judge.

Joel was statistically in more danger being denied breastmilk, having a blood draw, and being placed in foster care for 6 days than by the extremely remote possibility of having a genetic disease. Remember, he was already 6 weeks old when half of the diseases could be eliminated and had 9 healthy older siblings. There is absolutely no basis for saying that this was done for his benefit. All evidence show s that Joel was in fact traumatized by the whole process.

Thanks. Joel’s personal statistical chances of having a disease (considering 9 healthy siblings and the fact that as a healthy 6 week old most of the diseases would have already begun to manifest) was probably less than 1 in 100,000. His chances were higher to die in a car accident on the way to the lab. However, the judge said that she did not care how statistically rare the diseases were if the state could save one baby they should do it!!?? I guess all of our children should live in a bubble.

This site has complaint info. She also did 3 comic strips about our case. I am working on multiple bills for the state legislature.

http://www.thecowgoddess.com/?cat=11

Statistics
“Last year, out of 26,819 babies tested, 537 tested positive for one of the dozens of diseases, and 43 of those results were confirmed, according to the state’s Newborn Screening Program” AP article
This is the worse case scenario. 0.16%. The false positive rate is huge. That means 494 babies probably started unnecessary treatments. There are heartbreaking stories on the internet of mothers who were told to “stop breastfeeding” because of a positive screening only to be told later after their milk had dried up. Whoops! It was a false positive.
Although many in the medical community would have you to believe that not participating in blood screening is highly dangerous, I adamantly disagree. The diseases that are screened for are rare, genetic diseases not the more common communicable diseases. Dr. Norman Frost, a professor of pediatrics and director of the program in medical ethics at the University of Wisconsin, said in a quote to the New York Times: “The majority of newborn screenings have failed. Thousands of normal kids have been killed or gotten brain damage by screening tests and treatments that turned out to be ineffective and very dangerous.” Treating infants who have no symptoms of disease simply because of a positive test result is at best a questionable practice, but to have this practice forced upon families by the state is simply unconscionable.
A reader from the Sioux City Journal wrote on Oct 26, 2007 11:33 PM:
http://www.siouxcityjournal.com/articles/2007/10/20/news/nebraska/9ef0c64503ce08658625737a000e9cf2.txt
“ No family should have to go through such a traumatic event. Let’s hope this is resolved quickly so other families don’t have to go through this. My oldest child, by the way, still has a scar on her foot from the heel stick. It is a mark slightly larger than a pencil eraser, round and red, and she is 11 years old. When one pediatrician looked at her foot a year or two ago, they asked what the mark was. I told them, and they ADAMANTLY denied that it was a result from the prick. I explained that I KNOW my child. I have bathed and changed my child since birth. I watched as the scar never healed, I asked doctors who didn’t have an answer, and I watched over the years as the mark never faded or went away. Had I known the facts like Mrs. Anaya had, I would probably never have allowed such a painful and invasive procedure that has left a lasting mark.”

Another story given to me.
“My name is (removed) and on July 22, 2006 I gave birth to my baby boy at the University of Nebraska Medical Center. Hospital personnel insisted that we stay until my baby was 24 hours old, so that they could draw blood to screen for various diseases. We did not want it done, but they said it was the law. We asked her to explain what she was going to do. She explained that she had a card with dots that must be filled with blood. She said that 5 dots needed 2 drops on each and then the 6th larger dot must be completely filled with blood. She slit his heel with a scalpel and she repeatedly squeezed and squeezed his heel trying to get enough blood out to fill the card. He screamed during the blood draw and for over half an hour afterwards he would not calm down. His incision took two weeks to heal. The hospital personnel told me that it would not hurt my baby, instead it was very traumatic for my baby and for me.”

The test is not just 5 drops of blood. The smallest test is filling 5 circles on a filter paper with blood. The infant’s heel is cut with a variety of methods. I’ve heard of scalpels and straight razors, although now most places have a kinder device that provides the heel prick. Then the baby’s heel is squeezed repeatedly over each circle until the circle is filled with blood. It may take 2-5 squeezes per circle. Of course, the baby screams through it all. Bruising is quite common. If you receive the full scale screening as opposed to only what is mandated by law, then your tiny baby will have to suffer enough to fill one or more vials with blood.

Joel’s personal statistical chance of having a disease was significantly less than the average. He had 9 healthy fully biological siblings. He was nearly six weeks old and was given a physical that morning. Joel never had any feeding problems. He was at the 50th percentile for both height and weight. My husband is only 5’5” so we aren’t expecting overly large babies here. At our hearing with our daughter Rosa at 2 months, the state’s expert witness admitted that half of the diseases screened for could be eliminated for a baby who had no symptoms at that age.

So we are looking at definite trauma vs. about a 1 in 100,000 chance of disease.

Other facts about the diseases:

All are non-contagious and non-preventable. A positive screening result means that more testing must be done because of the high false positive rate. Once a definitive diagnosis is made, then treatment may be started. This often takes weeks or months. Usually by then, symptoms are beginning to manifest.

Family History

Oldest 2 children- not born in Nebraska. Oldest now 20-he went to college at 14, graduated at 17 with 2 degrees-youngest graduate ever of that University. 2nd oldest 17, sophomore at same university on the dean’s list.

Next 5 children-homebirthed in Nebraska.

Our first encounter with Nebraska’s newborn screening program was over 14 years ago. A couple weeks after a peaceful homebirth, we received a certified letter telling us to take our new baby to a laboratory for blood screening. We checked into the law and found no enforcement provision. We discussed the matter with others who had refused the screening and were told that we would be ignored or perhaps fined for non-compliance. However, we recognized that we may need to prove that we were not simply being neglectful. So we researched the Bible for Scriptures that related to the issue, prepared a statement, and had it notarized. Nothing happened then. We had more homebirths. We were ignored five times in a row. After most births we received two certified letters about the law. One time we received 3 notices.

Then after the birth of our 8th child, 6th born in Nebraska we received a subpoena to District Court when she was 2 months old. Apparently that had been added to the enforcement provision of the statute. We found a lawyer and fought it. That lawyer fought it based on the First Amendment free exercise of religion. The case was only heard by the local district court judge who understood nothing about the case and the Nebraska Supreme Court. The Nebraska Supreme Court moved the case from the appeals court and although we appealed the US Supreme Court did not hear the case.

With our 9th child, Justus, 2 years ago I drove across the Iowa border in active labor to avoid the situation. In Iowa. a waiver is included with the birth registration packet.

For the past 2 legislative sessions, State Senator Synowiecki has proposed exemption legislation. The 2nd time we had high hopes. We had more people testifying in favor of the bill than against, signed testimonies of the trauma the screening had caused other parents, and a petition signed by over 100 people. There were only a couple of testimonies from the state against the bill. However, it was killed in the health and human services committee and so never made it to the floor for a vote.

ghoward@leg.ne.gov;
thansen@leg.ne.gov;
perdman@leg.ne.gov;
jjohnson@leg.ne.gov;
astuthman@leg.ne.gov;
tgay@leg.ne.gov;
dpankonin@leg.ne.gov

Due to various reasons, Joel ended up being born in Nebraska. Believe me, if I had any idea this would have happened, I would have made more of an effort to have him in Iowa.

Joel was born on September 2. We immediately found a lawyer. On September 19th we received a certified letter telling us about the screening law and giving us until September 21st to test. Then, we received a phone call from Newborn Screening asking if we would test. We replied “no”. She asked if I knew what would happen next. I replied “yes” understanding that we would be subpoenaed into district court as stated in the statute.

In the meantime, we hoped to be ignored, but discussed new legal arguments with our lawyer. Weeks went by without hearing anything. We decided that they must have chosen to return to ignoring us.

Then, on the morning of October 11th just after I had gotten Joel up from his morning nap, my doorbell rang. When I answered the door, an armed sheriff’s deputy came barging into my house yelling that he had a court order for Joel Anaya. I was screaming that I had not given him permission to enter my home. He said that he had a court order. I said that I wanted to call my lawyer. He said, “There’s no time.” There were 2 other deputies with guns and clubs guarding my doorways. He heard my children downstairs and ran downstairs where all my young children were. He snatched Joel out of my son’s arms and headed for the door. Joel was fussing and I knew he hadn’t eaten in 3 hours. I begged to be allowed to nurse him. The deputy told me, “There is no time. He will be cared for by professionals.” He ran out the door with my baby leaving me begging to nurse my baby and yelling for my son to call the lawyer. It was a cold day and the CPS people were not there yet to hand the baby over to, so the weather forced him back inside. I was crying and pleading to nurse.

My husband came home from the store just then. The sheriff deputies blocked him from entering our home. The way our rights were trampled by the sheriff deputies and the Department of Health still astounds me. I relive the scene again and again.

We do not have a webpage for this, but that is a good idea. I will ask my oldest, a computer programmer, to work on it. In the meantime here is our lawyer’s blog. http://nebraskainjurylawreport.com/

We did get Joel back after 5 and a half terribly long days. There is a picture of me holding Joel with a few of my other children.

Again, please write to someone in post 11. My lawyer’s site will probably have additional addresses to write to eventually.

I hope none of you are under the illusion that the press reported things correctly. They keep hounding us to say more about our religious beliefs whereas we would prefer to keep
this an issue of conscience.

Facts:
Oldest 2 children- not born in Nebraska. Oldest now 20-he went to college at 14, graduated at 17 with 2 degrees-youngest graduate ever of that University. 2nd oldest 17, sophomore at same university on the dean’s list.

Next 5 children-homebirthed in Nebraska. Received certified letters telling us to take children in for screening.

Checked into the law and found no enforcement provision.
Informed by others who had refused that we would be ignored or fined for non-compliance. We were ignored all five times.

Our 8th child, 6th born in Nebraska was Rosa. When she was 2 months old we received a subpoena to District Court. That had been added to the enforcement provision of the statute. We found a lawyer and fought it. That lawyer wanted us to fight it based on the First Amendment free exercise of religion. The case was only heard by the local district
court judge who understood nothing about the case and by the Nebraska Supreme Court. The Nebraska Supreme Court moved the case from the appeals court and the US Supreme Court did not hear the case.

Our 9th child, Justus, was born 2 years ago in Iowa to avoid the situation. A waiver form is included in the birth registration packet there.

For 2 consecutive legislative sessions, State Senator Synowiecki has proposed exemption legislation. The 2nd time we had high hopes. We had more people testifying in favor of the bill than against, signed testimonies of the trauma the screening had caused other parents, and a petition signed by over 100 people. There were only a couple of testimonies
from the state against the bill. However, it was killed in the health and human services committee and never made it to the floor for a vote.

Here are e-mails for the committee:

perdman@leg.ne.gov;
jjohnson@leg.ne.gov;
astuthman@leg.ne.gov;
tgay@leg.ne.gov;
dpankonin@leg.ne.gov
ghoward@leg.ne.gov;
thansen@leg.ne.gov;

Due to various reasons, Joel ended up being born in Nebraska. Believe me, if I had any idea this would have happened, I would have made more of an effort to have him in Iowa.

Joel was born on September 2. We immediately found a lawyer. On September 19th we received a certified letter telling us about the screening law and giving us until September 21st
to test. Then, we received a phone call from Newborn Screening asking if we would test. We replied “no”. She asked if I knew what would happen next. I replied “yes” understanding that we would be subpoenaed into district court as stated in the statute.

Weeks went by without hearing anything. Then, on the morning of October 11th just after I had gotten Joel up from his morning nap, my doorbell rang. When I answered the door, an
armed sheriff’s deputy came barging into my house yelling that he had a court order for Joel Anaya. I was screaming that I had not given him permission to enter my home. He said that he had a court order. I said that I wanted to call my lawyer. He said, “There’s no time.” There were 2 other deputies with guns and clubs guarding my doorways. He heard my children downstairs and ran downstairs where all my young children were. He snatched Joel out of my son’s arms and headed for the door. Joel was fussing and I knew he hadn’t eaten in 3 hours. I begged to be allowed to nurse him. The deputy told me, “There is no time. He will be cared for by professionals.” He ran out the door with my baby leaving me begging to nurse my baby and screaming for my son to call the lawyer. It was a cold day and the CPS people were not there yet to hand the baby over to, so the weather forced him back inside. I was crying and pleading to nurse.

My husband came home from the store just then. The sheriff deputies blocked him from entering our home.

I do not have time to elaborate further, but I do want to mention that the social workers invited me along, were quite compassionate, and allowed me to nurse on demand the first
day and a half until the juvenile court judge got all bent out of shape about my frequent nursing.

My entire family has been needlessly traumatized. I can not begin to tell you about all the ripple effects. For the sake of future generations, please help us to fight this horrible injustice.