Refusing Newborn screen, am I alone?? - Page 4

[CherryBomb]

While I fully believe that every parent has the right to deny this test, I just truly cannot understand why they would choose to do so.

I agree. Then again, I don't understand the mentality that because something is rare, it won't happen to you (or your baby).

And it's completely false for anyone to suggest that most metabolic disorders can't be treated through diet. They absolutely can, and that's exactly why they screen for them at birth. Dd2 had to be retested because the initial screen showed she might have homocystinuria. Thankfully she didn't, but it drove home to me how important it is to get the screen. The earlier you know if your child has a metabolic disorder, the better. (Incidentally, we do know she has MTHFR, so she's been on a daily folic acid supplement since birth, which means she'll hopefully never suffer the negative effects of that).

[goldenwillow]

IVAMOM, wow! Thank you for sharing.

I too was VERY freaked of the heal prick, however, my MW came back over to the house the next day to check our DS and me! We opted to have the heal prick done at our MW's suggestion and DS was just fine.

[Climbergirl]

Originally Posted by azdesertrn

Off topic, but I am curious why this would be done as a heel prick? In my experience, the testing of baby's blood type is usually on a cord blood sample and then a maternal blood test is done to see how much rhogam to give (if needed). The only time I've seen one drawn from the baby is when they couldn't get a cord blood sample- or misplaced it in the lab.

I am birthing at home and my midwife is using an Eldon card to type the baby's blood quickly. I actually plan on talking to her more about what we should do if it comes back rh positive (as I do want to make sure I get the right amount of rhogam). I may be able to talk to her about doing a cord blood sample but not sure how fast the results could come back. I know she does the Eldon card and I am pretty sure they won't do a finger prick on a baby.

Sorry for going OT

[clarasmom]

"I agree. Then again, I don't understand the mentality that because something is rare, it won't happen to you (or your baby)."

And this is the mentality that scares moms into hospital births, vaccinations, circumcision, c-sections,etc..etc..etc...
There's a chance you'll get into a car accident on the way to the hospital to give birth, do you walk instead?

If having the newborn screening done makes you feel better, than do it. I have never advocated for or against the Newborn screen, and I have stated over, and over, and over again that I didn't want to debate the pros and cons.

Yes it bothers me that the vaccine maker Pfizer is trying to gain access to the leftover blood samples, and it really bothers me that the test is inaccurate with little being done to improve it, but I don't try to discourage parents from doing it.

I argue for informed consent and the freedom to choice. Right now parents have neither. Parents are not told the truth about the quality of the test, they are not told that their child's sample will be saved and used for reseach, and they are often bullied into the test with little option to opt out.

If I come off as snarky, I don't mean to, I just think their are so many other things that are worth debating, so many other aspects of pregnancy, birth and parenting that have stronger right or wrong concepts. People will never agree on the "right" way to be pregnant, give birth or raise a child.

[*MamaJen*]

I think part of sound decision making involves weighing likelihood, risks and rewards.
To me, PKU testing is nothing remotely like an unnecessary C-section or circumcision. Something like a C-section has very clear risks, along with circumcision, hospital births, etc. Many would argue that vaccinations have clear risks and low reward (after a lot of research I chose to vaccinate on just a slightly delayed schedule, but I respect the thought process and cost-benefit analysis of parents who don't vaccinate).
I think that, while the likelihood of having a metabolic disorder is low, the test has virtually no risks and a potentially huge reward. So for me, it's a very easy decision to make. If you're concerned about where the sample ends up, go through a private lab or lobby for change. But don't disregard the test altogether.

As far as the accuracy of the test goes -- in a lot of screening tests, from a public health perspective, what you're trying to do is capture as many positive results as possible while missing as few positive results (false negatives) as possible, for the lowest possible cost -- remember, you're administering this test millions of times per year.
That's why a lot of these general screening tests have a high rate of false positives. Is it ideal? No. But currently it's the best we have. Pap smears also have a high rate of false positives, and many abnormal pap smears fix themselves. Others, if left untreated, go on to cervical cancer. Even though the rate of "false positives" -- in this case, abnormalities that will clear themselves without treatment -- is high, the screening has led to a 75 percent decline in cervical cancer deaths in the last 50 years, by catching those cases that do need treatment. And like the PKU testing, this is a case where early detection can make a huge difference in outcome.
To me, the main difference between Pap smears and PKU testing is that an adult woman should be responsible for making sure she's getting regular pap smears, while a newborn can't make the decision to get tested for a disorder that could leave them profoundly disabled within a year, or non-disabled with dietary restrictions. We as parents have to do that for them.
You keep on saying that you don't want to debate this, but in an open forum, if you start a topic, people are going to respond and they may very well express strongly differing viewpoints from you (hopefully in a respectful manner, since this is MDC.)

[caedmyn]

I think the bottom line is, if you (anyone) are comfortable with the chance (however slight) that opting out could lead to your child ending up with long term disability or death that could have been prevented had you chosen to screen, and you can feel that you can live with that if it were to happen, then opt out. I completely agree that it should be optional and done only with truly informed consent. But personally I would not be able to live with it if something were to happen because I opted out, so I choose to have it done.

Really everything's a matter of a risk-benefit analysis, and to me many things come down to whether you can live with the possible consequences no matter which way you choose. I feel that I can live with the slim possibility that my baby might due during a homebirth when that could have been prevented if I birthed in a hospital. I think that risk is more than offset by the lack of interventions at home and better outcomes in many cases at home because of that. Obviously many people do not feel that way so they choose to birth in a hospital.

I guess that's my bottom line on many decisions related to my children, how comfortable I am with worst-case scenarios if I choose something different than the "mainstream", as well as considering the more obvious risks & benefits.

I hope that makes sense, it's not coming out quite the way I want it!

[Lilypie32]

Our state only tests for a few things at the newborn screen so we paid out of pocket for a private lab to do a full screen. The heel prick was simple as we also used heel warmers. My son did not even cry. I don't vaccinate but I would definitely do the screening. Not doing so could lead to permanent damage to my child and I was not willing to take the risk.