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Discussion Starter · #1 ·
Hi all you Mommas,

I totally support UC, midwives and homebirths.


A question came up in my nursing class (since ya'll know I am a nursing student)* for maternal and newborns when discussing UC or homebirths that I did not know how to answer. I was defending the position that it is a woman's right to choose where and how she is to give birth.

The question was about newborn screening. Who does that when a baby is born at home or a birthing center?

The state of Wisconsin has a whole testing program for newborns for a wide array of genetic anomolies from hemophilia to cystic fibrosis.

Any thoughts on this I can take back to class and also be more educated myself?

I am hoping to specialize in women's health someday.

Thanks,

V

*Kinda funny to think that in 8 weeks I am going to be a NURSING student, not just a student of nursing.
 

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Quote:

Originally Posted by noteworthy
The question was about newborn screening. Who does that when a baby is born at home or a birthing center?
Most midwives offer it, or you can take your baby to a doctor/ped. Some parents even do it themselves. Others, of course, refuse. I think many who choose the newborn screening use an alternative schedule than the hospital. Instead of doing the test on days 1 and 3, the test is typically done one time between days 4 and 10 after the infant has been receiving breastmilk for about 2 days. The test is more accurate this way.

Also, I think if you search over at the vax and/or birth forums, this topic was recently discussed in depth with lots of good links.

HTH,
 

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You take the baby in if you want them. I'm going to a naturopath after birth if I need the RhoGAM and if I wanted she could screen the baby's hearing there, and she'd give me a lab slip for the PKU and it would be done in the lab. For some reason they don't do heel pricks in the office. If I could just get the blotter paper, I could do the PKU/metabolic stuff myself and mail it in.

Because of the rate of false positives and the fact that if the baby DOES have a false positive for PKU they would likely order me to stop breastfeeding or at least cut back on breastfeeding, we will be declining it because I do not want to risk the trauma and harm a false + could cause for something VERY unlikely to happen, as both hubby and I do not have a family history of any metabolic disorder


I don't feel the need for newborn hearing screening either, I would not want social services or whoever to provide services should my baby have problem with hearing, and I feel that I could tell if my child was deaf on my own and would formulate intervention for them that is right for them and our family, which might not necessarily be the same as the state's idea of what it needs to be.

Okay, this is just 'Cara get on a soapbox about all newborn/L&D procedures' week.

Cara
 

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Not in your group, but know the answer here


Homebirth midwives do the testing here.

With a UC if you want the testing you can get your ped. to do it or take them to a clinic or hospital for it.

Personally I chose not to do it.

-Angela
 

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Discussion Starter · #6 ·
Thanks for the info.... I will do some surfing on that forum.
I am really hoping to do some educating of classmates.

V
 

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Discussion Starter · #7 ·
myhoneyswife said:
Because of the rate of false positives and the fact that if the baby DOES have a false positive for PKU they would likely order me to stop breastfeeding or at least cut back on breastfeeding, we will be declining it because I do not want to risk the trauma and harm a false + could cause for something VERY unlikely to happen, as both hubby and I do not have a family history of any metabolic disorder


I don't feel the need for newborn hearing screening either, I would not want social services or whoever to provide services should my baby have problem with hearing, and I feel that I could tell if my child was deaf on my own and would formulate intervention for them that is right for them and our family, which might not necessarily be the same as the state's idea of what it needs to be.

Thanks for the soapbox pitch Cara! I wouldn't necessariy want social services intervening in my family affairs either. Who knows what would happen. Yikes!
Can I ask where you found the resource for the false positive rate on PKU testing? Then I can pass that on too.

Why wait the 10 days after birth?

V
 

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Quote:

Originally Posted by noteworthy
Why wait the 10 days after birth?

It may take 10 days for PKU to show up, as baby needs to be actively metabolizing the breastmilk in order it to work. Not unheard of for it to take 7 days for milk to come in, then giving a few more days for good measure
I do not think baby would be harmed by an extra 5 or so days of being exclusively breastfed if it did have PKU, so I'd rather error on the side of waiting.

Interesting fact:

Quote:
Breast milk contains only 12 to 14 mg of phenylalanine per ounce, compared with 24 to 28 mg per ounce in formula.
False positive:

Quote:
False-Positive Results
Although initial PKU screening demonstrates positive results in 1 percent of infants, there is only a 10 percent chance that an infant with an initial positive result has the disorder (false-positive rate of 90 percent).6 A repeat test must be performed if the initial test is positive. False-negative results are rare. Infants should be given a normal diet until a definitive diagnosis is made.
Link for both of the above quotes

HOLY COW! Didn't realize the false positive was THAT high. Yup, that furthers my resolve for no testing. Glad you asked for links
Looking this stuff up is good, it helps me solidify my views...

Signs and symptoms of PKU even without testing:

Quote:
Symptoms usually develop within a few months after birth, when phenylalanine has built up in a baby's system from consuming the protein in formula or breast milk. Before birth, the mother's body filters out the excess phenylalanine for the unborn baby.

Early symptoms of PKU include a musty odor to the skin, hair, and urine. Babies may lose weight from vomiting and frequent diarrhea, be irritable, have skin problems, and be sensitive to light.
link

Cara
 

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Discussion Starter · #9 ·
Oh for crying out loud... sounds like that screening needs to be pitched along with the maternal triple/quad screen at 16 weeks.

sometimes, I am honored to be associated with the medical community, other times I shake my head and wonder, and the rest of the time, I hope I can make a difference.

Thanks for all the info Cara,


V
 

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Quote:

Originally Posted by noteworthy
sometimes, I am honored to be associated with the medical community, other times I shake my head and wonder, and the rest of the time, I hope I can make a difference.

LOL, you know I went to school to be a nurse... Did the prereqs then applied for the program... And then started researching birth and determined that I'd probably be fired so maybe I should go ahead and not do the next 2 years...
:
I do medical transcription now, not a real risk of being fired because I work for a hospital in New York and live in Montana... Yup, totally get ya!



Cara
 

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I am ok with the screenings in my state (my family actually has some risk factors, but even if not I think I'd be ok with it). I am birthing with midwives at a birth center and it appears they have to document in their records (for whoever looks over their shoulder) that I have selected a pediatrician for the baby and that the ped and I understand to have the 1st visit within 48 hrs of birth and that the ped will take over baby care from then on. The ped does the screenings.
 

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just an FYI, the "newborn screening" doesn't just test for PKU but also
for a host of other very rare but potentially damaging metabolic disorders, so although the false positive rate for PKU may be as high as 1% of infants, it is not the only metabolic disorder being tested for.

Cara, do you have any info pertaining to false positives for the other metabolic disorders the newborn screening tests for? just wondering...

here, the midwives attending homebirths give the parents the informed consent option to choose the newborn screening. we have the order the kit ourselves from the state office (make a phone call, send in a form with a check or maybe now even on the web) but the midwives will perform the test should the parents desire it. as for freebirthing parents, i'm sure they can choose to take their child to a pediatric care providers (MD, ND, DO, NP, county health clinic, etc.) to have the test performed.

~claudia
 

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Quote:

Originally Posted by TurboClaudia

Cara, do you have any info pertaining to false positives for the other metabolic disorders the newborn screening tests for? just wondering...

~claudia
I can find it... I know it varies by state, I think there are something like 32 different things it can screen for, but not all states do all of them? I'll just look up my state because I'm too lazy to look up everyone's...
 

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Okay, we have 4

Condition: Galactosemia

This autosomal recessive disorder occurs with an incidence of approximately 1:40-60,000 in the general population.
Clinical Features
Galactose-1-phosphate uridyltransferase deficiency (Gal-1-PUT)
Galactosemia, due to a complete lack of Gal-1-PUT activity, presents in the first weeks of life. The most prominent clinical features are liver dysfunction manifest as jaundice and hypoglycemia; neurologic findings of irritability and seizures; and gastrointestinal findings of poor feeding, vomiting, and diarrhea.
The infant's feeding should be changed to soy formula immediately upon positive finding.
this enzyme is heat-sensitive and results may be skewed if the sample sits in a hot mailbox
Only 1 in 190 infants recalled in galactosemia
screening programs will actually have classic
galactosemia
link

Congenital Hypothyroidism
* incidence of 1:4,000 births
*Clinical signs: feeding problems, lethargy, prolonged postnatal jaundice, delayed stooling and constipation, enlarged protruding tongue, hoarse cry, protruding abdomen with an umbilical hernia, cold mottled skin, sluggish reflexes, patent posterior fontanelle with widely spread cranial sutures or delayed skeletal maturation for gestational age.
*Nearly 90 percent of CH cases are detected by newborn screening; however, the remaining 10 percent must be detected clinically
* it is twice as common in females as in males.
*On average, the Newborn Screening Program identifies 60-70 new cases of CH each year.
*In established U.S. screening programs, there are 4-8 false positives for
every proven case

***This one doesn't seem too bad to me, I may look into seeing if I can get this and decline the others, we'll see. Breastfeeding is not contraindicated

Hemoglobinopathies
Hemoglobinopathies, including sickle cell disease, are disorders caused by abnormal red blood cells and occur in 1 out of every 375 African-American births
Sickle cell diseases affect more than 50,000 Americans, primarily those of African heritage, but also those of Mediterranean, Caribbean, South and Central American, Arabian or East Indian heritage.
If Untreated: Frequent infections and sudden anemic crises often leading to death
Therapy: -Daily regimen of penicillin prophylaxis through age six
-Immunization against Pneumococcal and Hemophilus influenza infection
-Frequent prevention health monitoring utilizing a comprehensive team
-Rapid access to appropriate emergency medical care

525 000 infants with dried blood samples had only 4 false negative and 32 false positive results ***eh, pretty good!

Then, I already did the PKU stuff...

Quote:
Consequently, on average, there are more than 50 false-positive results for every true-positive result identified through newborn screening in the United States.
Link (has to do with all metabolic testing)

LOL, I'm such a dork! I love researching stuff.

Cara
 

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Discussion Starter · #16 ·
In Wisconsin, if it is a hospital birth, it is mandatory by state statute that a nurse or physician collect a sample.
Parents can only deny on religious beliefs grounds. Somewhat surprising since I think WI is so progressive.
Hmmm, I have a friend who works for the state lab. I will chat with her about this sometime.

I am so into the research thing too. A geek at heart! LOL!
Nursing school has taught me to always research and the web has been the best tool. Can't imagine life without my www.

V

Thanks for all the imput ladies! MDC rocks!
 
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