I've been checking into the option of using the cord blood for the testing suggested for newborns. I am wondering if someone could help me find info on the reliability of hypothyroid testing through cord blood....I've already read that in the first 24-48 hours you may get a false positive with the heel prick, can I assume that would hold true with the cord blood as well?

I like the idea of using the cord blood for the inital test, with the follow-up urine analysis at 6 weeks...much less invasive! Hemoglobinopathy testing isn't a problem this way either.... a quote I stumbled across -

"Alternatively, cord blood samples can be used for neonatal screening. The hemoglobin components within these samples (especially Hb Barts) are more stable, and the problem of contamination by transfusion is avoided." Taken from the National Institutes of Health Consensus Development Conference Statement.

How much info is available for these tests to be done on cord blood as opposed to the traditional heel prick? I am hoping to collect enough info so that my midwife can keep this for future clients to have access to this info as well.

THE RESPONSES:

• This is interesting. I'll have to look into.. due to my severe hypo problems especially in the first 3 months, we have to have the baby checked with the PKU... if there's a better way to do it that would be awesome although I talked to my MW yesterday about donating cord blood and she said they rarely get enough to fill the tube unless they cut the cord early and I don't want to do that.

• I have heard using a vacutainer tube while the cord is still pulsating works well.

• From what I know most hospital born babies get their PKU before 24 hours postpartum. We usually do the first on day 3. The first test is essentially for hypothyroidism. Therefore, there is no need to wait to see if baby responds to mother's milk, etc. (like when looking for galactosemia or PKU). It makes sense that this first test could be done with cord blood.

  It was interesting about the hemoglobinopathies. So, can the PKU and galactosemia be detected via urinalysis? What about Maple Syrup Urine disease?

• PKU can be done with the cord blood for the initial test, followed by a PKU urinalysis at about 6 weeks PP. I learned this through this link - http://www.gentlebirth.org/archives/pku.html#How

  A little over halfway down the page, a midwife has this to say:

  "Well I explained that most folks don't want to "stick" their baby after this nice peaceful homebirth (one of the reasons I hated having to do them earlier than the 5 days). One of the pediatricians piped up that they could just do the test on the cord blood!!!!!! I asked why in the world they did not do that anyway??? He said because the test was more expensive that way - all of something like 30$$ vs 12$$. So I passed that on to the parents and local midwives. It needed to be set up with the hospital ahead of time - but these folks were so concerned to be sure every infant was screened they said they felt that if parents felt that strongly then they would waive the fee. So anyway you all might want to contact the newborn screening dept where you are and check out the cord blood test and the fact that this was 7 years ago. I am sure the test are even more advanced, especially the sensitivity of the PKU."

  And a follow-up post...

  "I spoke with the director of medical genetics and the newborn screening laboratory for Childrens Hospital of the University of Pittsburgh Medical center. Dr Jan Bruck. I spoke at length with her about newborn screen and performing PKUs. So the good news is that was correct that PKU's can be done on cord blood!!!!!! Now let me qualify that. PKUs done on cord blood will miss a very rare PKU baby/the more mild case. So The Newborn screen dept suggests that for parents who do not want to do a heel stick on the babe that a safe and non-traumatic way to screen adequately is to use cord blood directly onto the card. A severely affected infant will show positive for PKU with cord blood, the cord blood PKU card should then be followed by a PKU urine test at 4 to 6 weeks. Dr. Burke assured me that then you would catch the otherwise milder case of PKU that may not be picked up by cord blood. Now another possible scenario she mentioned is that the mothers blood could also be drawn at birth and fill a separate card with. You would then need to ask the lab for numerical values for the assay on the PKU. Should the baby's numerical value exceed the mothers even if they are within normal limits this would be suspicious. And another PKU test should be done. This would not seem to be the choice of practice since Dr. Burke seemed to think that the cord blood test combined with PKU urine test at 4 to 6 weeks was as accurate.

  "Perhaps if you were concerned about loosing track of the parents for some reason this could be requested. Most of the other 35 (yes she said 35) tests they now do should be fine on cord blood, but I would like to call her on Monday to verify that again, she did say so but I was not as specific as I would like to have been. I am also going to have her fax me information and studies."

  My midwife and I are trying to verify this information, since this would be an appealing alternative to the Lancet they now use for the 'heel prick.' Otherwise, I am seriously considering declining the tests altogether. BTW, I just noticed the second post had said that most of the 35 other tests are fine to be tested this way as well. Maybe I can e-mail the site owner and ask for someone to e-mail me info specifically on this?

• Wouldn't the testing lab be able to give you this info as well? I think I will call ours here in Oregon and see what they say. A friend from WA called theirs and found out that out of six circles, only three need to be filled for all the diseases (they just have six there in case one isn't soaked through enough, etc.). I think they're pretty open about this type of info, as they would want it done accurately and correctly.

• I have been thinking about newborn testing as well. The HIV test is required in my state (at 1st prenantal visit, at 6 months....OR they test the baby at birth) I just found out from my MW yesterday that they can test the cord blood. I am refusing the 6m test-- it would be like my 7th HIV test!!-- and I *know* I am a-ok. I don't want to risk a false positive. I do not want the baby to have to have the test either, BUT the cord blood test *seems* ok at this point.

  I also talked to my MW about the antibiotic eye drops. She is fine with EBM instead. Thoughts??

  Finally... Thanks for all of the great PKU info! I'll be checking into it with my MWs as well!!

• Is the HIV test really required to be done? or is it required that they offer it? Here in CA they have to offer it but you can say no. I don't know of any requirement that the baby be tested for HIV. Doesn't it take a few days (or weeks?) for the mother's antibodies to clear out of the baby's blood anyway? I have heard about babies testing positive for HIV antibodies because the mother was HIV+, but later testing negative becaue they didn't actually have the virus, just the antibodies from their mother which later cleared away. Can anyone verify that?

• I know that pregnancy is one of the many things that can cause a false positive HIV test. And, considering what they want to do to pregnant women and babies re: HIV, that is very, very scary. Mandatory testing is a slippery slope. I would fight against that for pregnant women.

• Yes, pregnancy is one of the 60 or 70 false positive reasons.

• On a list I am on someone tracked down the exact law for their state after they were threatened with having to get their baby tested after birth if they themselves refused testing. The actual law said that it was required that the test be offered if testing for the mother was refused, but that you had the right to refuse the test for the baby as well. When in doubt, check out your state's law - like with the vaccine issue, some medical people will make out you have no choice, when there is *always* an out clause (to protect the state so they are not responsible if something goes wrong).

• We declined the eyedrops at our homebirth and I did put breastmilk (dropped straight from the source) into her eyes.