newborn blood screen/heel stick?

We are researching whether to proceed with the newborn heel stick for our baby, due in July. We are generally opposed to all interventions for newborns, especially vaccines, but also unnecessary blood tests.
I am looking for more information about why the following diseases/disorders are tested for within two weeks and not later, such as at 1 or 2 months. If they can wait, we want to wait until it seems safer for the baby.
WI tests newborn blood for these illnesses:
* Biotinidase deficiency
* Congenital adrenal hyperplasia (CAH)
* Congenital hypothyroidism
* Cystic fibrosis (CF)
* Galactosemia
* Phenylketonuria (PKU)
* Sickle cell disease and related red blood cell disorders
* Aminoacidopathies
* Fatty acid oxidation disorders
* Organic acidemias
If anyone can recommend a good place I can go to or a book that thoroughly discusses the actual need for these tests (like if we have no family history of that are we really at risk?) and the 1-2 week timeframe recommended by WI, so we can make a truly informed decision, I would really appreciate it.
Kim


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I know that many of the diseases are carried by recessive genes so it's possible that you and your partner could be carriers even though there is no family history.
The reason for early testing is that some of the diseases are life threatening if proper treatment isn't given. For instance, babies born with Galactosemia are unable to digest galactose which is a breakdown product of lactose. Those babies need special diets in order to thrive. The incidence is low, about 1 of every 7,500 live births.
While I'm also opposed to most routine tests and interventions, the heel prick is the only one we consented to. Our midwife came to our home and very gently took the blood samples from our daughter's heel (as gently as can be done, at least).
--Kari


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Can't help w/ the researching, but here is our story...
I'm generally opposed to intervention/testing as well, and this is the only thing we decided to do. We felt that - even though the chances were low - IF our baby had a treatable problem and we hadn't done it, we'd feel horrible. I was a nervous wreck when we took him for it, but it was really quick, the tech who did it was wonderful, and he only cried for about 30 seconds.


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The risks are very small, but some people consider them important.
Here is more information for WI:

Here's what is tested for in WI:
Here are the rates of occurrence in WI:
According to this, you can refuse the test for religious reasons: (which includes ANY religion, even the religion of we-don't-do-newborn-screening!)
Hope this helps. I have many clients that choose not to do the screen. Probably about 35% of my clients don't do it.


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Thanks for all your info and stories.
Truthfully, we don't know what we'll do yet - but we have lots of time to figure it out. My own feelings are those of massive reluctance. With dd it was awful - she had had a vit. K shot (never again) at the hospital while I was getting my perineum stitched after I tore badly at home and her blood would NOT flow for our midwife, who stuck her twice the next day to no avail. At the clinic, I nearly passed out when the nice technician poked her because she screamed so much. I couldn't believe I was causing this much torture for my new babe. And of course, all results were negative.
The stats you linked, pamamidwife, are very helpful! And I did know about the religious exemption. We would definitely be choosing the "we don't test newborns" religion! :LOL
Since I don't know anything about my birth father's side of the family, medical decisions are harder, but my gut is never wrong.
OK, off to not think about it...


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I thought it was kind of strange at the time. The nurse who did my dd's PKU in the hospital got the blood from the back of her hand. She didn't even wake up for it. The nurse said it doesn't hurt them as much there. Two weeks later when we did it again in her ped's office I told the nurse there that. She said "Oh" and poked her in the heel. She screamed horribly! It broke my heart to hear that.


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also, keep in mind that babies who receive vit k have far more vitk in their bodies than adult humans do. this affects the blood flow for newborn screenings.


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also, keep in mind that babies who receive vit k have far more vitk in their bodies than adult humans do. this affects the blood flow for newborn screenings. Oh yeah - Unfortunately, with dd, I learned that quite well. :( Plus I was drinking tons of vit. K-rich nettle infusion every day, which may have already gotten into my babe through my colostrum/milk. It didn't help that my midwife really *hated* doing the heel stick, too.

I am aware that it is unlikely I would have to go through the trauma of witnessing my next babe experience such torture this time around if we choose to do the testing. However, it is also just as unlikely we would have a gentle, baby-cue-following blood drawer in our crappy small-town hospital... I am soooo not into our local health care/medical facility here, based on two minor incidents involving dd and myself where the protocol recommended to us was extreme intervention: x-ray and stomach pumping or some other crazy invasive procedure for a small pebble 2yo dd ingested, and prophylactic super antibiotics for me when I discovered a deer tick embedded in my leg two weeks ago, even though I caught it within 12 hours of it biting me, and there was no diagnosis or symptoms of Lyme disease. This is deeply influencing my feelings about bringing my newborn anywhere near these people.
Rant over. Thanks again, everyone, for your replies.


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One thing to remember is that if you go through with the heel stick, try to nurse your baby during the procedure. I have seen quite a few babies sleep right through it. It definately lessens the pain for them. Insist on it.


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Pam you would likely know the answer to this.... doesn't the way the blood is collected affect the test as well? I was under the impression (not sure from where) that if the heel is massaged to much after pricking in an attempt to get it to bleed that you end up with skin cells in the sample which can greatly affect the test results. I have yet to see a practioner gather blood from a heel with out mashing the heck out of it..


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supposedly, but unless you do venipuncture (which is supposed to be more gentle on baby, as was mentioned, and you obviously get a 'purer' sample) I would think milking the lower leg is necessary unless you get a capillary and a nice flow [which happens sometimes].


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Have any of the the other midwives tried the Neat Nick lancet? I have used it a few times and found that it produces an incision that bleeds well without mashing but also heals well.
I was taught to gently wipe with gauze when the blood starts to clot (wipe away clots on the surface). I wonder how that affects the purity of the sample?
We also see about 30-40 percent of our clients choose to have us do the newborn screen. Some others have them done in the pediatrician's, some decline them entirely.
A lot of the diseases that the newborn screen tests for are double recessive (meaning both mom and dad have to be carriers, but also that the disease could skip several generations without showing up). Some are also quite population-specific, like sickle cell anemia, which is more prevalent people of African origin, and Cystic Fibrosis, which is more prevalent in people of Northern European origin.


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I've tried every lancet out there and I'm currently using the NeatNick lancet. There are still times where, especially if the baby had Vit K shot, we have to even poke twice. :(


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I allowed my DD my first child to undergo this test since I knew nothing of my FILs background; she cried so much I decided not to do it the second time.
Well, DS was born and the state added two more tests that were pertinent to my family's background. I agreed to the test, and he turned out to have a low thyroid so I said lets do something about this, and the doctors said, no, it is not low functioning enough ? WTF?
So with #3 and #4, I just said no.
No tests, and they are fine, thank you very much!


Answers:

Pam you would likely know the answer to this.... doesn't the way the blood is collected affect the test as well? I was under the impression (not sure from where) that if the heel is massaged to much after pricking in an attempt to get it to bleed that you end up with skin cells in the sample which can greatly affect the test results. I have yet to see a practioner gather blood from a heel with out mashing the heck out of it..
Milking the heel increases the amount of serum in the sample. I never, ever, ever milk a baby's foot. Instead, I discovered that gently pumping or "bicycling" the babies leg increases blood flow and I get nice fat drops of blood. Having Mom holding the baby upright helps with blood flow downward to the foot. Making the foot nice and toasty warm before the stick also helps with blood flow, I use a heating pad or a warm, wet towel for about 10-15 minutes before the stick.


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I've tried every lancet out there and I'm currently using the NeatNick lancet. There are still times where, especially if the baby had Vit K shot, we have to even poke twice. :( We use QuickHeel, it seems to work quite well.


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I did allow this, but our homebirth midwife was stellar and it was quick. We were part of the one in 7000 stats. While two of our children were fine, one of them is a carrier of sickle cell, and through that we learned my dh is as well. Not life-threatening, but good to know. We had no idea dh was a carrier. It's only a problem if two carriers have a child together. The test doesn't put anything into a child's body, but can give important info. It's important that someone who knows how to get the sample do it. I nursed the babies through it and that helped. My midwife also had me elevate the babies, by putting a pillow under my elbow & forearm. It was over very quickly and the babes were never out of my arms. OTOH, a couple of mothers in my playgroup didn't do it at all and their babies 'are fine' .


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newborn, but this is a test that we did and will do again this time. I worked with the Genetic and Metabolic Screening Division that deals with the testing, treatment and follow up for all children with genetic or metabolic disorders in the state of IL. Many of the parents have no idea that they carry one of the traits or that their child has a statistical chance of getting any of the disorders. In some of the disorders, beginning early treatment can save the future health of the child and prevent future mental or physical impairment.
Yes, the likelihood of you being positive is so slim but the tests have very low false positives so once it is done, it is done. Error is a rarity. Most of the cases that I dealt with for casework follow up involved Sickle Cell or other hemoglobin based disorders just for reference.

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