newborn tests?

[hawkfeather]

Hi there.. I haven't been a poster here, so forgive me if i am posting something that has been discussed !
I am wondering what others are doing newborn procedure wise..
we are having a homebirth and rigth now are in discussion about hwat tests we feel are needed.. we wont be doing eye drops, and we are leaning towards not doing vitamon K or the PKU screen (heal prick).. I am also unsure about doing the GBS screen..
It does seem mothers are not always very fairly informed abotu what the risks are, and the chocie is made so often out of fear, which hey, is valid, we all want what is best for our wee ones..just curious..where others stand, and looking for some feedback.

[ctdoula]

Why are you thinking of not doing the Newborn Screening (PKU), etc. It's minimally invasive & picks up some of the most common inborn metabolic disorders (PKU, Maple Syrup Urine Disease, Cystic Fibrosis, Sickle Cell Anemia, Hypothyiroidism just to name a few). Honestly, I am at a loss why people don't want this test. These disorders can cause life long terrible problems and even death if not recognized, but are for the most part treatable/controllable if known about.

That said we'll do standard nb screen, hearing screen, etc.

[liawbh]

I'm still unsure of some things, but right now I'm leaning toward just the PKU and then the physical (hearing, etc) exam, but not the vit K. THe two I'm most unsure about are the GBS test and the eye ointment. The GBS wasn't even around when ds was born. I think I'm going to get the herbal protocol from my MW and do it but not test. As far as the ointment, I dont have stds, but I have had bacterial vaginitus a year ago and 2 years ago. I need to know if that's a consideration before I decide for sure.

[Tanibani]

Second time (since I knew more) I said no to Vitamin K, eye goop, and my homebirth midwife did not push GBS testing (which I loved because I was GBS positive the last time and got a ton of IV antibiotics). I also do not vax.

I am with ctdoula though on newborn screening (heel prick).

There is no con. It's just a simple heel prick that could screen for diseases. We opted to get expanded testing (test for every single thing they test - about 40 - versus the measley 4-8 states test for, depending on what state you live in.)

There was an article in People Magazine about this issue last July, so I sent the following e-mail to my pregnant girlfiends at the time. They highlighted a heartbreaking story of parents who lost their preschooler very suddenly. He got sick (out of nowhere) and ended up dying. They didn't know he had a genetic disease (easily treatable had they known, had he been tested at birth.) There was another story of a family who did find out (kid was fine) because of the test. Savebabies.org has family stories. Here is one:
The economic cost of not screening - Brett's story

Though parents may not realize it, every newborn baby is automatically tested (hospital births) for a variety of potentially fatal genetic diseases — many of which are easily treatable if caught early enough. But surprisingly, when it comes to genetic screening, not all babies are treated equally. Depending on which state you live in, the number of diseases for which tests are conducted varies widely. And even though additional testing is relatively inexpensive and easily available, many parents are totally in the dark about their options.

The state of California pays for Newborn Screening of 4 diseases only (1. Galactosemia 2. Hypothyroidism (congenital) 2. Phenylketonuria (PKU) 4. Sickle Cell Disease (SCD) and Hemoglobinopathies).

However, in Nevada, the state requires screening for 34 diseases:
http://www.savebabies.org/states/nevada.php

So you see, the problem is... there are MANY screening tests available, but most parents don't know about it. Some states screen for more tests than others. The March of Dimes are trying to get states to expand their testing. States are fighting it because it costs them more money. (Well, personally, if states can pay for it, then parents should be educated about it and pay for it if they can. Most families can. The states should pay for families who don't have the means. That's fair.)

Prevention
Affected babies are at risk of mental retardation, physical disabilities and even death if they are not diagnosed and treated early. Comprehensive newborn screening gives you the opportunity to protect your baby from the preventable complications of undiagnosed problems. If your baby is affected, newborn screening can play a key role in allowing you child to live a normal life.

My midwife mentioned this to me (because my 6 yr old nephew, born to David's sister, was born with a genetic problem - low muscle tone and he still doesn't speak) as something we may be interested in (i.e., supplemental testing.) (I am happy she mentioned it, but I truly every family should do this, because you never know.)

She handed me the brochure for PEDIATRIX SCREENING, a company that does the screening for an additional 40 genetic diseases.* You call them up, before your baby arrives to order the kit $89.95 plus next day shipping $6.95.
http://www.pediatrixscreening.com/
1-866-463-6436

(I had a homebirth the second time and my baby was born 3 weeks early! A day after she was born, I rushed and ordered the kit and it came in time for my midwife's check-up.)

They mail you the kit and you hand it over to your hospital or midwife. 2-3 days after the baby is born, they remove blood from the baby's heel just to get a few drops to submit for the test. This can be done at the same time the California tests are done. So they do 1 heel prick and put 4 drops of blood on one form and then 4 drops of blood on another form, and mail it to those labs.

Chances are very high that your baby is perfectly healthy. But this (to me) is a no brainer... it just screens the baby who has X disease... and then they are identified and can be treated early.

TODAY SHOW highlighted the problem a few weeks ago. The March of Dimes is trying to increase awareness.
http://www.msnbc.msn.com/id/5318863

More info:
http://www.savebabies.org/index.php

My pediatrician's office called me this week to let me know that the Pediatrix test came back negative. I wasn't surprised (or stressed over the test results - in my heart I knew she was OK.) I was just happy that I knew about the test because it helped me feel proactive.

I just thought of a con. There are some diseases that are fatal. I suppose some parents would not want to know in advance. Still, I would like my children tested. Because if they had a disease that was treatable, and died because we didn't know, that would be far more tragic.

RE - Vitamin K, you should read Baby Matters by Linda Palmer She mentions some studies linking the Vit K shot to Leukemia. I probably posted the info on some vax thread (do a search - good luck finding it.)

[danaalex]

i'm not 100% sure of this but i think the number of disorders that are screened for correlate with the name of the test. in some states, it's like 4-5 disorders and i think that is the PKU test. while other states have the HMD and that tests for more disorders. again, i'm not 100% on this. this is the ONLY thing, other than the hearing screen, that we'll be doing. i'm a total supporter of knowing if my child might have one of these metabolic disorders. the key to getting accurate results the FIRST time is making sure that the baby has had "food" in it's system for no less than 24 hrs when the sample is drawn. the body needs to be metabolizing when the blood is drawn or the results will be inconclusive. SO! if you are delivering at home make sure this is done about 3-7 days after birth. if you're at a hospital, don't let them draw it until 24 hrs have past since the baby latched on for the first time. if you are at a birth center or leave a hospital before 24 hrs, DON"T let them draw it. take the test slip and forms with you and either go to a lab or your ped's office after 3-7 days. if you can avoid having to have the test redone, do so.

the eye goop and vit k are not necessary in all cases. so, these really are a personal choice. if you know you have had an STD you might want to get the eye stuff, just to be on the safe side. i know that they've linked early childhood blindness to herpes transfered during a vag delivery. but if you know you're STD free and always have been. there is no reason for it. and if you're having a csection there really is no need for it. as for the vit k. in school we were taught that it had two purposes, one was red blood cell production, and the other was gastrointestinal flora production. do most babies need it, no. as for the link to leukemia. i have a really hard time believing that. i worked peds oncology for quite i awhile, and ALL of the research out there shows NO cause for pediatric cancer. there is nothing that causes it. just a random even that occurs and whamo. there are theories but nothing is provable. and just so you know, every single person in the world, including babies, have cancer cells living dormant in their bodies. they just need a trigger to start growing. and again, in children, no one knows why................

[saharasky]

Hi hawkfeather!

No eye goop for my baby ... it BURNS ... dd was perscribed some when she was a few months old for pink eye ...and I tried it ...NOT COMFY (and pretty useless when you already know you don't have any horrid STD's for them to contract)

No vitamin k ...unless something horribly bruising happens during birth (ie shoulder dystocia and the collarbone gets broken)

I would choose not to do the PKU test (and will be delaying it until we've got good BF started so that I can nurse him/her while it is done ... dd was on the breast when she had hers done and she was so relaxed she barely noticed) ...the reason I do get it done is to keep the public health nurses off my doorstep ... I heard from my midwife that they are fairly aggressive in this province if it isn't done. Ironically I'm more worried about being harrassed by mainstream healthcare than I am about any of the disorders that are tested for.

[natashaccat]

I'm doing the PKU, probably vit K, not eye goop unless hospital transfer where I'm sure I'll bigger issues to fight about.

Is there a post birth GBS test for baby? If so I would authorize it because my WM cannot treat known GBS positive patients so I'm reluctantly declining the prenatal GBS test. I would like to have this info but not at the risk of having to do a hospital birth.

[hawkfeather]

"Why are you thinking of not doing the Newborn Screening (PKU), etc. It's minimally invasive & picks up some of the most common inborn metabolic disorders (PKU, Maple Syrup Urine Disease, Cystic Fibrosis, Sickle Cell Anemia, Hypothyiroidism just to name a few). Honestly, I am at a loss why people don't want this test."

Where i live, and in general the pku test has been for specifically, phenylketonuria (pku) which affects aprox 1 in every 18, 000 babies...Congential hyperthyroidism which is about 1 in 3000.. and Galactosaemia which affects aprox 1 in every 50, 000 babies...as of recently it also tests for MCAD or medium chain Acyl-CoA Dehydrogenase deficiency..
as for cystic fibrosis or sickle cell anemia..even msud.. it isn't a test for these things either way where I live, or as far as I know in Canada at all..

Many mothers refuse to have the erythromycin drops, and even the vitmain k shot.. in my case (I can't speak for other mamas, but it seems a universal reason) the reason I don't do it, is that is invasive.. to me spritiually i fully feel that the way a baby is brought into this reality will affect it's entire life, the way it bonds with me and my partner and our children..I refuse invasive and un-justified medical tests and procedures for myself for pregnancy and birth, failing an emergency, i will not have an epidural, vag exams, episiotomy or really any of the other standard interventions, although it can be argued they serve a prupose (as does the pku screen).. i don't feel the risks outweigh the impact...i avoid painful procedures, or invasive ones, because my own comfort affects my health and well being, and I also strive to protect my children from pain, I doubt i would like a heal prick, i don't like blood being drawn.. i think that is fair bascially....I could argue easily for myself that i would rather have eye drops than blood drawn.. i might even rather have a quick injection in a fatty area than blood drawn..but still i assume I will not be doing any of the tests either way.. i am still thinking about it.. but I hope I explained *why* i wouldn't do it...
a child is at greater risk of developing hemorrhagic disease (the diseas the vitamin k shot is to protect against).. 1 in every 1,200.. and for that matter is far more likely to develop complications due to exposure to gonorrhea or chlamydia in an infant (often even in mothers who are confident they *don't* have it, as both illnesses can lay dormant for many years, and you can even test negative fro them and still be colonizing the illness, therefore still spread it)....but still the risks are worth weighing against the impact in my opinion.....the con is not a huge one.. but it has deep meaning to me none-the less.. the con is basically inflicting pain upon someone who I am attempting to develop a trusting relationship with.. i am aware that it *saves* lives, I am just trying to be well informed, and find a way in life that i am making choices that are not fear based....

[proudmamanow]

Hawkfeather,
thanks for raising this. We are also planning a homebirth with midwives. They have informed us about the tests, but leave it up to us to make the final decision, which I really appreciate.
I know we are still grappling with these tests as well. I know that they routinely don't do some of them until 4-5 days after birth, when breastfeeding is well established, so that there are less false positives. But we are still reflecting on which tests we think our necessary, and I very much appreciate your perspective and all the information as we grapple with this.

And ITA with your philosophy re: not making fear-based decisions

[FreeRangeMama]

We did absolutely no testing with our last homebirth (UC) and will do none this time either (unless we feel there is some indication it is necessary). In fact, my ds2 is 17 months old and has yet to see a doctor for any reason. I don't see the point in testing "just in case". We don't do things based in fear, only based on whether or not it is medically necessary. Not everyone is comfortable with this approach, but it works for us. Most diseases or disorders have some symptoms that a mother will likely pick up on intuitively. I speak from experience as my ds1 has a life threatening food allergy and has been near death several times because of it. No doctors believed me for the first several YEARS of his life and he almost died because of their neglegence (I knew exactly what the problem was at 4 months). There are just so many illnesses or disorders out there, testing for a few might give some security, but truly it is the tip of the iceburg.

This is what works for us, I say just do what your gut tells you

[wasabi]

When I had my first two they didn't even do GBS. Knowing that hardly any other countries do it highlights how useless it is still. However after finding out that the hospital would require the baby to stay for 48 hours to make sure she didn't run a fever if I decline it I will reluctantly agree to doing the test. I want to go home ASAP. Of course the whole issue is that my water never breaks on its own and I don't want to get to the hospital until I'm pushing. I know the antibiotics have to be in for four hours prior to birth for them to work (assuming they would) so again what is the point? Regardless I'm hoping for a negative and doing what I can taking probiotics and hoping I'll be negative as I was with DD. If not I'll try some other remedies and make them retest me.

My goal is to refuse the eye drops. In my state they are required by law although it is not enforced in all hospitals in the state but mine does. I have been told I'd need a court order to refuse them but no one including my midwives or my ped or the attorney I talked to can tell me where or how I should go about getting a court order. Having given up on that I now intend to walk in with the part of the health code that says any of the codes and be refused for a religious objection and make it clear to them that I have no STDs and will fight them if they try to make me get them. Let them get their own court order at least then I'd get my chance to present my side since no one can tell me how now. Very annoying. I also intend to pass on the vitamin K. My DD's birth was super traumatic on many levels and I want a much more peaceful experience for my baby this time around. I'll do the PKU though I want to wait until the one week check-up since I've read that the early test at the hospital might not be reliable and I want to get home as soon as I can so the baby won't have had food in its system for 24 hours beforehand. I know that my DD hadn't been latched on for 24 hours when she had hers done either and there was never a follow-up done nor were we told she should have one. Still burns me up.

[lllani]

Gbs

I tested positive for Group B Strep with my first pregnancy and since my water broke first they put me on IV antibiotics (two doses) during the labor. Luckily I didn't develop thrush or anything like that...

With second I asked what would happen, got my OB to agree that if I tested positive (which I didnt) that I would go in in early labor for first dose of antibiotics and then go home and be given the second dose when I choose to return. The risk here is that if you don't get two full doses in enough time before delivery the baby is monitored in nursery/nicu for at least 24 hours to be sure the one dose isn't just masking symptoms.... In that case my doctor said if I was going quickly we would do no doses and then they would just monitor the baby while roomed in with me....

As it turned out I was negative but this is a funny thing since one day you can test positive and two days later negative or vice versa.... it is highly inaccurate. Also the quickie version of the test they sometimes do at last minute has a high rate of false positives too... so be aware....

With my third I also tested negative so no issues... haven't had it yet this time one of the next visits though I think.....

As for us, we don't do the vit K or eye ointment as this is done so soon after birth, not necessary in our case, and interferes with the initial bonding b/c baby can't see mom. If done we wait at least until after first hour or so and then only use the erythormycin version as it is less irritating. We do the hearing screening as the baby is asleep during it and our birth center lets us hold the baby while test performed.... We do the PKU but like someone else said, not until at least 2 days old and while nursing to relieve pain....

Lani
mom to 4- almost (due early April)