On December 14th, 2006, my life was blessed a third time with the arrival of my third child. As is the practice of hospitals around Minnesota, she was subjected to a toe poke in which drops of blood are extracted to test for a wide variety of conditions.
Within weeks we received a letter informing us that our precious new bundle had Biotinidase Deficiency. Our hearts dropped as we read an informational pamphlet describing what the deficiency is and what problems it can cause if untreated.
Within weeks we received a letter informing us that our precious new bundle had Biotinidase Deficiency. Our hearts dropped as we read an informational pamphlet describing what the deficiency is and what problems it can cause if untreated.
What is Biotinidase Deficiency?
A condition that causes the body to have trouble using biotin, an important vitamin the body needs. Biotin is found in many foods. However, a person with Biotinidase Deficiency needs more biotin than the amount eaten in the normal diet.
What problems can Biotinidase Deficiency cause?
Untreated Biotinidase Deficiency can cause seizures, low muscle tone, hearing loss, eye problems, hair loss, skin rashes, and possibly coma or death.
It was a toe poke which allowed us to quickly identify the problem and take action to treat it. Due to a simple toe poke I can report that this lovely little child is developing nicely with a simple daily dose of biotin. Without a simple toe poke we would most likely be making numerous trips to the doctor as our child exhibited these damaging signs which would have irreversible effects. It is for these reasons that I became so angry to read THIS story in the Star Tribune.
Apparently, this woman named Twila Base is fighting to discontinue the mandatory nature of the toe poke in Minnesota.
I take issue with this statement:
Brase said she's not against newborn testing, but thinks parents should choose whether to do it.
This places parents in a reactionary role in the health of their child rather than the proactive role that every parent should be in the health of their child. Had these proactive tests not been administered or had I refused to have them administered I would now be regretting that decision as I reacted to a variety of symptoms developing in my child. Any parent who would refuse to have a test done to proactively check for treatable conditions in my view is negligent.
Please, email or call Twila (e: info@cchconline.org p: 651.646.8935) and tell her to stop!
Also, please call or email your state legislators to keep this woman from gaining influence over our lawmakers!
7 responses to "Tell Twila Brase To Shut Her Pie Hole!"
The problem is it's not just testing to help poor old incompetent parents who don't bother to do their research out.
The state is actually storing the genetic information of all of the babies born in Minnesota over the last decade or more and there's not much you can do about it.
I thought you liberals were in favor of privacy rights and keeping big brother out of our lives.
Well, anonymous, then you really ought to tell Twila to change her focus from making the screening optional to regulating the storage of that information.
What amount of research would parents be able to do to detect these conditions in their newborn child without the toe poke? You may have a valid argument about the storage of such information, but Twila clearly wants parents to be able to opt out of a preventative test. THAT is negligence.
By the way, I don't think for a moment that I inserted political affiliation into the article but way to go! I would have disagreed just as vehemently with her if she was a "liberal".
You don't need to insert political affiliation into your posts, it's in your blog title.
I'm not suggesting that there's any amount of research that you can do to detect such problems in your child. I am insisting that anyone who takes on the responsibility of raising a child needs to do the research on what tests and vaccinations are available and recommended and make an informed decision about them.
Did you know that that very toe prick test is more accurate if you just wait until the first well-baby checkup to have it done?
Anon - You may insist that anyone who takes on the responsibility of raising a child needs to do the research, but that will not make it happen. Some new parents won't because they aren't good parents, but the vast majority of new parents won't because they don't know any better.
On a similar point, I have a son with special needs. If it weren't for the fact that my wife is an early childhood special education teacher, I wouldn't have the first clue about where to go for support or what to do to figure out what to do. There's a lot of information; it's impossible to understand without help. The same is true for medicine, and it's good for medical professionals to automatically provide that help ... but I agree about the storage. It would be hard to convince me that the benefits of storing that information outweigh the damage to a person's privacy.
I'm not suggesting that there's any amount of research that you can do to detect such problems in your child. I am insisting that anyone who takes on the responsibility of
raising a child needs to do the research on what tests and vaccinations are available and recommended and make an informed decision about them.
Did you know that that very toe prick test is more accurate if you just wait until the first well-baby checkup to have it done?
Let me get this straight: I make the argument that Twila should not be trying to make these tests optional and the best argument you can come up with is that the test is more accurate at a later date. OK, require it at a later date then, but still require it as you yourself have admitted that it is accurate. Again, an argument could be made about how or if we should store such information but to make these tests optional is to take a risk with the health of your child and that is unacceptable.
My argument isn't that it's more accurate date. I was just noting the kind of things you might learn if you bothered to be an active parent.
My argument is that the government should stay out of the way. The fundamental difference between conservatives and liberals is that you would have the government monitor and manage every aspect of one's life. Conservatives believe that the individual should be responsible to make their own decisions and the government just needs to stay out of the way.
This will be my last post on the subject as I realize that there's no way you'll ever get it.
The storage of the blood spots is necessary to calibrate the machines to make sure that it catches the disorders acurately. My son's newborn screening was positive at birth for phyenylketonuria but a comedy of medical errors kept him from being diagnosed until he had suffered massive brain damage.
We want the State to test and we want their hands to be clean -- if a parent chooses not to test and the kid has a metabolic disorder, even if we look past the damage to the child and the pressure on the family, the costs society bares in educating the child, the medical care, the family supports, and later, institutionalization is far greater than the cost to the parent of their right to choose the test or not.