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Refusing Newborn screen, am I alone??

post #1 of 67
Thread Starter 
Ok, so anyone that lives in Texas knows there was a big to-do about the state selling left over blood spots for research and saving DNA for law enforcement purposes.... I have had my other babies do the newborn screen in the past, and I even had a false positive that caused my baby to be put awful bloodwork for no reason. We are refusing the PKU this time around, and I'm curious if there are any other mommas out there skipping it. My dd was put through over an hour and more than a dozen heelpricks to get her first test done, we did not repeat it at the two week visit. my ds had a "false positive", had to held done to get blood taken from his arm, only to find out that the false positive was caused by having the test done at two days old, too early to get an accurate result.
I'm not looking for reasons why we should do the newborn screen, we've already made the desicion not to, I'm just curious what other people's experiences were with refusing.
post #2 of 67
I would call myself very low intervention, but I always advocate strongly for doing the newborn screen.
It's not an intervention in the sense of something going into your baby, like a vaccine or vitamin k shot -- it's just a heel prick. My homebirth midwife did it quickly and skillfully as I nursed, and it was really non-traumatic. DS cried more for the footprint. She also waited until breastfeeding was established to do the test. We only had to do it once.
The thing is, PKU and the other metabolic disorders are absolutely devastating if not caught in time -- think profound mental retardation -- but can be totally controlled if discovered early. I would never skip the PKU testing, because I feel it has little to no risk, but could give my child a normal life rather than a severely disabled one.
Here's what happened with the blood spots; apparently they are not selling them now: http://www.statesman.com/news/texas-...rss_news_41793.
I think there are also some opt-out procedures in place.
post #3 of 67
Thank you for that link. As a relatively new Texas resident I wasn't aware of any of this. I planned to allow our midwife to perform the PKU test and I still will, I also believe the benefits outweigh the risks. But I definitely plan to ask about and look for the opt-out section as well.
post #4 of 67
Thread Starter 
there is a huge loop-hole with the op-out..... "According to the Use and Storage of Newborn Screening Bloodspot Cards information provided to parents, identifying information linking a child to a particular bloodspot is not allowed outside of the Department of State Health Services without advance consent of the child’s parent or guardian unless otherwise provided by law."

Patient privacy expert Dr. Deborah Peel said those words, "unless otherwise provided by law" create a huge loophole.

Also the lawsuit did not include the samples being sent to the military labs for DNA storage.

I'm not going argue for or against the newborn screening... you will and can find people who argue for and against vitamin K, eye drops, circumcision,etc...etc... Having had a false positive for a disorder, putting my newborn through horrific follow-up care, to be told " the test has really high false/positives because it's done too early after birth", I'm not interested in going that route again. for every positive result, there are 200 false/positives... the test isn't perfect...

And as far as the arguement of the
post #5 of 67
if the problem with the test is that it's done too soon, when should it be done? I'm definately going to do it, but I thought it was supposed to be done within like 48 hours of the birth or something like that. That was always the ONE test that I was fine with them doing. With my DD they only did it once right after birth.. they never did it again after that.
post #6 of 67
DH and I are going through the decision process right now. My biggest concern is that my state retains the sample INDEFINITELY. My midwives said that if you write to the state they will send you back the screening card (they take 4 blood spots and use 2). That has satisified me but DH is still concerned.

I know nothing about what goes on at the lab, etc. With the 2 spots they use, they look for the specific disorders they test for and there's a chance they could retain the results (i.e. child was negative for PKU disorder, etc.) but there's no way they could map my child's entire DNA from one little spot of blood, right? Once they run their tests on the 2 samples they are no good, right? This may sound absolutely stupid but I am not a science person and I really have no idea!

Would love to hear others thoughts/experience/knowledge from a privacy standpoint.
post #7 of 67
We are not having the newborn screening done.
post #8 of 67
I wonder if you could go through a private lab rather than through the state?
post #9 of 67

DNA profile

No you cannot "map" an entire DNA genome from a drop of blood. Usually scientists only analyze certain markers (kind of like comparing brown hair to blond, lets count how many each in a certain geographic/demographic area).

You also have the fact that there isn't much DNA in a tiny blood spot. Red blood cells do have a nucleus (the center "capsule" of a cell that contains the DNA). They don't have a nucleus because of their shape (if they did they wouldn't fit through the blood vessels properly).

The government has been collecting these samples for LONG time, and they cannot be used for "tracking." (I really mean they cannot, the information isn't there - a lot of samples are a disorganized mess). They are used for population studies by researchers as an easy source of data/samples.

Both myself and my husband are involved in research and are both scientists, myself a biochemist and he's a physicist. Our science backgrounds are extensive. I also polled my FIL about this; he's a academic pediatric researcher for a university.

It can see very big brother, but really the government doesn't have the organizational skills to pull off what you're scared of.
post #10 of 67
Quote:
Originally Posted by Illiana View Post
if the problem with the test is that it's done too soon, when should it be done? I'm definately going to do it, but I thought it was supposed to be done within like 48 hours of the birth or something like that.
We have just been doing some research on this as well. Between 4-9 days after birth is the best time to do the test. If you do it sooner the likelihood of getting a false positive goes way up, because the baby's breastfeeding or feeding has not been established.
post #11 of 67
Thread Starter 
Texas agreed to take part in the Armed Forces DNA Identification Laboratory database project, which gets it samples from the newborn screen. Jim Harrington the civil rights lawyer who sued for the samples being sold to Texas A&M, is considering suing again, because the state did not disclose or include the samples sent to the DNA database in the lawsuit settlement. This is not fridge science, these are the facts in my state. In many states it automatic to store the samples and use it for research, over 20 papers have been published based on research done on newborn samples. Honestly, the mis-use of the samples is not why we won't be doing it, but it certainly doesn't motivate me.
post #12 of 67
Here is a link to what each state tests for in their newborn screening:

http://genes-r-us.uthscsa.edu/nbsdisorders.pdf
post #13 of 67
I'm all for choice, and chose to do one with both my homebirth's. Happy that I did it, because it told me that my kids carry a hemoglobin trait that won't affect their lives, but may affect their children's, depending on who they mate with. I think the info that it provides can be very useful.
post #14 of 67
I am not in Texas but we had a big issue refusing the newborn screen. My mw was ok with us not doing it, as we had a homebirth. But we had an emergency transfer after his birth and the PICU was livid that we wouldn't give in. Even tried to railroad my dh that they wouldnt release our son until we did the test, while i was showering and not present. I put the stop on it and asked for the paperwork to waive the test. Once the Dr. realized i wasn't budging and knew the waiver existed they complied.
post #15 of 67
Quote:
Originally Posted by crunchy_mommy View Post
I wonder if you could go through a private lab rather than through the state?
there are several private labs that do newborn screening that will NOT sell/disclose the information to anyone but you. We did this with 2 of ours due to the limited screening in state compared to all the private labs could test for. They are done the same way as all the other newborn screenings but the results (at lesat for ours) was sent to us. I feel this way I have the info which I believe to be vital and can choose whether I need to follow up with it or not but feel better knowing my child's dna isnt being sold or *researched*.

google expanded newborn screening
post #16 of 67
how can our babies' blood spot be used against us (or our babies)?
Not being snarky here, just sincerely trying to understand what harm can befall on us as a result of the blood swapping for supplies.
I understand that it is at the very least very, very unethical, but realistically, what harm (as opposed to the benefits of catching a severely debilitating condition early)?
post #17 of 67
Thread Starter 
Quote:
Originally Posted by grumpybear View Post
how can our babies' blood spot be used against us (or our babies)?
Not being snarky here, just sincerely trying to understand what harm can befall on us as a result of the blood swapping for supplies.
I understand that it is at the very least very, very unethical, but realistically, what harm (as opposed to the benefits of catching a severely debilitating condition early)?
The problem is informed consent. You probably wouldn't let them cut a lock of hair from your child to do research on, and probably wouldn't allow them to take a blood sample just to hold on to DNA information for future use... and who knows how the information will truly be used... The newborn screen itself is part research... parents get a call that your baby carries a gene for a certain disease but doesn't have the disease.... great, so now you are worried about your future grandchildren in the future, maybe possibly having a disorder... Well if your child wants genetic testing done before having kids, they can make the desicion when they get there. They use the newborn screen as an oppurtunity to take information for private and public use that you would not consent to otherwise... they use the "dead baby" card to scare pregnant mommas to comply. The vitamin K shot might possibly prevent something.... the eye goop might possibly prevent something.... circumsision might possibly prevent something... the newborn screen might possibly find something...but it does provide a great chance to get info that the parents wouldn't otherwise give us.
post #18 of 67
As a seasoned mom of four children ages, 19, 16 12 1/2 and 7, I wanted to share my perspective on newborn screening. They were each screened in the hospital where they were born and all was fine and each are not any worse for the wear as a result of their little heel prick. PKU is just one disorder that is a part of newborn screening. Currently, the American College of Medical Genetics recommends each state screen for 29 disorders. My two younger children have a disorder that was not being screened for at the time of their births. Nine years ago, Stephen was 3 1/2 and that is when his undetected disorder revealed itself. Imagine finding your beautiful, healthy toddler unrepsonsive and breathing faster than you can imagine with a pulse that took EMTs 3 times to get because they couldn't count fast enough. Within 24 hours, Stephen was in a coma on life support and we got the diagnosis. It was too late however, to prevent severe brain damage. He remained in that state for 3 weeks and we nearly lost him. He spent almost 4 weeks in the PICU and 6 weeks in rehab. He survived, but is now a child with severe disabilities unable to walk or talk or eat. He is fed through a G Tube, is legally blind, takes 4 medications for seizure control and has many orthopedic issues. Remember, he appeared to be normal prior to his crisis and was running around with his big brothers, playing with is Thomas the Tank Engine trains the day before he got sick. he was my little buddy that went everywhere with me. Our latest hurdle is that Stephen has to have major surgery this fall to place titanium rods in his back to correct his scoliosis due to his lack of muscle strength and spasticity. He has had surgery for retracted testicles due to spasticity. Hospital admissions are a part of life for him along with the high medical bills. We also live with the perpetual grief of all that we have lost with Stephen. Our dreams for him are very different from what they were when he was born. All of this could have been prevented if his disorder was part of the newborn screening process at the time of his birth. My daughter is the youngest and she was screened in utero after what we learned through Stephen. As sad as we were, we were happy that we found out early and by doing so, she benefited from early management and treatment of her disorder and continues to do so. She is living the life that Stephen was robbed of. If I can offer one piece of honest to goodness advice, please make sure your baby gets his or her newborn screening. We had no indication at all that we were at risk of having one of these disorders in our family. Most people don't. For all having babies, this is a very special time in your life and as you pick our nurseries, car seats, clothes, etc., you will be doing your baby a great disservice if you opt out of the newborn screening, because you never know if it will come back to haunt you like it did for us and our chidlren were screened. It is such a simple screening test in which most people move on with life and never have to give a second thought to, but for a certain few, it will be a lifesaving test done that can make the difference of a life like my daughter's or one like Stephen's. Not a day goes by that I don't think about all of the "what ifs". As for the government using the blood spot cards for DNA testing, be cautious of people who are trying to taint a program that was developed years ago to protect babie's health and save lives from disorders that are very unforgiving if a baby is affected. There is a lot of propoganda out there from people who really don't grasp the true consequences of these disorders if not screened for. Much effort is being done to ensure that parents are properly educated on the whole process to include to blood spot card storage and use. Parental consent is included. Remember, the sole purpose of newborn screening is to save lives and it is doing so each day as more babies are being picked up with their disorders early and spared the life Stephen lives. As for the storage and use, it is a separate issue and is dealt with separately. It too is not some scifi activity taking place by the government to rob people of their DNA and use it for negative reasons. People are trying to find ways to better understand these disorders to improve screening, treatment and management. As a country, we are all demanding more research for cancer cures, Alzheimers, Parkinsons, etc. We need it with metabolic disorders too because without it, babies may never have a childhood or reach adulthood. When you look at your new baby, protect his or her life and the dreams you have for him or her. Get your baby screened and educate yourself on newborn screening from reputable medical staff and websites like that given in another post. The National Newborn Screening and Genetics Resource Center, Genetic Alliance and the American College of Medical Genetics are all wonderful sites to go to.
post #19 of 67
Thread Starter 
I am very sorry for your situation, I am. However, I have seen the other side. The newborn screen is not anywhere close to being an accurate predictor of a disorder. People make strong arguments for and against vitamin K and circumcision also, and I think it's important for every parent to examine what they think is best for their child.
"They were each screened in the hospital where they were born and all was fine and each are not any worse for the wear as a result of their little heel prick." I'm not afraid of a heal prick, but I have been put through a false positive, only to be told that the newborn screen in not accurate and that 200 times to 1, it panics a family for nothing. My reason for posting this in the first place was to see what other people's experiences with refusing the test were like. I stand behind my choice not to screen 100%.
post #20 of 67
Thanks for sharing your story, Ivamom.
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