New tests for newborns create dilemmas for parents: How much do you want to know?

You may remember those mean nurses poking your newborn in the heel and drawing blood for tests. You may not have realized at the time how many tests they would actually run and how revealing those test can be.

As technology has improved those newborn screenings can literally reveal hundreds of possible diseases – some that have current treatments and other that don’t. But how much do parents really want or need to know about their days-old infants?

From the Wall Street Journal:

“ ‘Newborn testing identifies at least 3,400 babies with a disorder each year, according to the Centers for Disease Control and Prevention. The programs generally have focused on well-understood medical conditions in which early intervention can make a difference in a baby’s life. For example, the genetic disease phenylketonuria, or PKU, if left untreated, causes a protein to build up in the body and leads to brain damage. A special diet, including low-protein foods, can prevent it.’ ”

“Proponents of broader screening programs say early intervention in a disease can improve a child’s life and might speed the development of treatments for rare diseases, where symptoms often don’t appear until severe damage has occurred. Often there are few specialists knowledgable about rare disorders, and newborn screening can save families years of anguish searching for a diagnosis. Some parents also say the information is important to know for family-planning purposes.”

“But critics say the additional tests may raise flags that lead to unnecessary further testing, or treatment, for babies who will not get sick. The tests can add big additional costs to the health-care system, they say. And some people are concerned about privacy, since stored blood-spot samples can be used by researchers. Some states give parents the ability to decide whether they want a child’s specimens used for research purposes.”

So what do you think? How much do you want to know? Do you want the option of not choosing to test? Do you not want to know? Do you only want to know diseases if they have a treatment for it or need to be treated right away?

How should these tests be used?

(Be sure to check out the first blog of today — I’m baack!)

40 comments Add your comment

[...] (Check out the second blog of the day – How much do parents want to know about their newborn&#… [...]

shaggy

July 28th, 2011
7:27 am

“How much do you want to know?”
Only that my wife and the baby are healthy. The rest will take care of itself.

Jeff

July 28th, 2011
7:51 am

Preach it Shaggy.

I wonder, though, how close we are to doing even more of these tests earlier in the pregnancy? For example, a couple wants a boy, finds out it’s a girl at week 8 and decides to abort? Is that possible now? I have no idea. Just asking. I guess I have opened the can, but is that something we’re comfortable with? It’s not much more of a step between taking a blood sample for a test @ 1 hour old versus in the womb.

Miss Priss!

July 28th, 2011
8:33 am

Mean nurses? How are they “mean?” They’re doing their job to benefit your child! OMG.

Becky

July 28th, 2011
8:45 am

Guess there’s nothing wrong with knowing ahead of time and being prepared..I guess a lot has to do with the parents, some can handle having a child that has health problems, others would go crazy..

My exs neice was 40 when she got pregnant for the first time..So of course they ran a lot of test on her..When she was about 12 weeks, they told her that the babys brain was not developing and that if she kpt the baby, he would basically be brain dead..She chose to abort and most of his family disowned her after that..

@Miss Priss! Lay off Theresa..I’m thinking that the “mean” nurses was a figure of speech..A lot of us know that certain things are good for us, but the process to get it, isn’t always fun or easy..

homeschooler

July 28th, 2011
8:58 am

Like anything else, parents need to stay educated themselves on what each of these tests is for. It gets very confusing. The PKU is so important and has saved many lives. But, the medical profession is famous for going overboard, so, I’m sure many of these tests are unnecessary. Just like immunizations. The American Academy of Pediatrics recommended my 7yr have 25 injections by the age of 2. With my first, I just went along with what they recommended but when we were facing 25 injections, I looked closer into it. I decided not to have her immunized for chicken pox, pneumonia and a couple others.

And, after a month off...

July 28th, 2011
9:28 am

…the paranoia has returned – but , you were missed…

MomOf2Girls

July 28th, 2011
9:28 am

@homeschooler, you may want to rethink the chicken pox vaccine. Although we all (at least those of us over a certain age) remember having chicken pox and being mildly ill, parents having “pox parties”, etc, there are certainly complications up to and including death. A recent survey found chicken pox has been drastically reduced as a result of the vaccine, which means a child is much less likely to be exposed now. However, at some point, unless it is completely eradicated there will probably be exposure, and if it’s as an adult, the complications are much more likely to be severe.

On topic, I believe that tests that can reveal a substantial (ie life-altering) problem that is treatable should be done. Any test that will not alter actions should not be done. In other words, let me know something’s going on if I can do something about it, but don’t let me know if it’s just for knowledge’s sake. Of course it’s not that cut and dried in real life – you have variables such as rarity of disease / condition and cost of test to consider as well. However, I still hold firm on not doing it if it won’t change anything.

catlady

July 28th, 2011
10:02 am

I would want to know all I could know so I could be more aware of things to keep an eye on. NOT helicopter over, not devote an hour a day to worrying about, not chart every BM, but general trends I need to bring to the attention of the doctor if they are germane to the problem.

JATL

July 28th, 2011
10:07 am

Welcome back! While not as long as yours, we did a long road trip with the kiddos to Oklahoma and back, and the boys were great! I was surprised they handled being cooped up in the car that well.

On topic-IF the test results can lead us to preventative measures or treatment that will make a big difference in health or quality of life for a child, then yes, I want to know. I like being prepared!

Lady Strange

July 28th, 2011
10:29 am

I would rather know so I could prepare. If something showed positive then further testing would be done and I would want my child to get the best care they can, the sooner the better IMO. I haven’t done all the vaccines recommended just the ones required for school. The others I decide if my child needs them or not.

theresa

July 28th, 2011
11:07 am

I had a parenthetical after the first sentence saying I don’t really think nurses are mean so please don’t yell at me about that. But I took it out deciding it wasn’t necessary to explain but I guess it was. I’m a huge fan of nurses after having a brotherin the ICU for 10 weeks unable to walk. Talk or feed himsef. The nurses at emory were amazing. Also one of my favorite nurses is julie duncan at piedmont who teaches all their lactation and perinatal education and she is awesome. I also love the nurse practitioners at walgreens who take care of my colds and the nurse practitioners at my obgyns who are awesome.

P...

July 28th, 2011
11:45 am

Enter your comments here

Please...

July 28th, 2011
11:46 am

…”I also love the nurse practitioners at walgreens who take care of my colds and the nurse practitioners at my obgyns who are awesome”.

You REALLY need to learn the3 difference between “nurses” and “nurse practitioners” – you have insulted a whole host of your constituents…

motherjanegoose

July 28th, 2011
11:55 am

re: chicken pox or varicella ( sp) vaccine. I am pretty sure you will have to have that one and perhaps others before college. We had the first varicella but not the second booster and it was a merry go round trying to get it, last summer.
My son HAD the chicken pox, so no issue. I would think it would be a hassle to have to catch up on all vaccines the summer before college but that might just be me. May be not all colleges require the full list of vaccines? This, I do not know.

They say it is more dangerous to get chicken pox as an adult.

Theresa Walsh Giarrusso

July 28th, 2011
12:12 pm

I am well aware that nurse practitioners have a higher level of training and education. I am saying I like them all!!

Warrior Woman

July 28th, 2011
12:39 pm

I agree with those that have said that tests should only be done for diseases where knowledge could result in treatment.

There haven’t been many comments on the privacy issues related to all these tests. I believe that parents should have to “opt-in” – to explicitly grant permission for sample retention and use in research – before the samples can be used. This would be a sea change from the current environment, where most parents are never told the samples may be used for research and objecting parents must “opt-out” if their state permits them to do so.

Theresa Walsh Giarrusso

July 28th, 2011
1:00 pm

JATL = hang on to your OK stories for the cross country blog – I want to hear all about your experiences. do you want to send me a couple of photos of your trip with descriptions — it would be fun to run that.

Lori

July 28th, 2011
1:01 pm

I’m not sure how much I’d want to know. I’m pregnant now, so this topic is pretty relevant for me. But when my baby is born, do I want to be able to enjoy him for a while, or do I want to be immediately scared and worried about some disease he may or may not ever develop symptoms for. I guess for me it would depend on what they are testing for.

And to add to the chicken pox discussion…I’d be more worried about shingles as an older adult. If you’ve never had the chicken pox, then you can’t get shingles, which I understand is very debilitating. So, I’d recommend the vaccine. Personally, I’ve never had chicken pox, but I was vaccinated along with my first child when he started school in order to be sure I never get it.

JATL

July 28th, 2011
1:40 pm

TWG -I will try to do that tonight! All I have during the day now is my iPhone, so it’s kind of a pain, but I’ll be working on my home PC all night.

motherjanegoose

July 28th, 2011
2:10 pm

JATK…what did you guys do in Oklahoma? I do not think of it as a vacation destination but I do know some of the most delightful people there, as I have worked with many of them. Are your boys into cowboys? Did you go through Arkansas? That state has some pretty beautiful scenery too. I lived there, for a while, in HS but have traveled across the state, as an adult.

TWG…I have logged many mile on trips but most of them on Delta… LOL. While I have seen, poked around and enjoyed every single state, the long car trips have not been my cup of tea. I did those growing up and am glad that I did not have to repeat them with my own two. I do look forward to hearing about your trip.

I know this is OFF topic…anyone know much to do near Highlands/Cashiers NC? My sister and I want to take one more quick weekend trip and I have never been there. Is it a neat place?

motherjanegoose

July 28th, 2011
2:11 pm

ooops…JATL…sorry!

Paulo977

July 28th, 2011
2:38 pm

Yes JATL …

do send us pics

Ye, Motherjane...

July 28th, 2011
2:46 pm

…Highlands/Cashiers in the summer is a “destination of choice” place – beautiful scenary and stuff to do (if you like antiqueing {sp}?). Usually HOT as blazes in the daytime (since you expect it to be cooler), and that should be double this year, though it usually cools off substantially in the evening, though, agian, this year may be an exception. You should have a great time…

Vicki

July 28th, 2011
3:31 pm

I guess most people are missing the point. These metabolic tests are done so if there is an issue in many cases the diet can be change ASAP to prevent brain damage etc. It is done to give the baby/families the best possible outcome because if you wait until there are symptoms the damage already done is not reversible.

Lisa

July 28th, 2011
3:36 pm

I would think that EVERY parent would want to know as much about their baby’s health as possible. I had a preemie (7 weeks early) and I saw him with IV’s, PIC lines, feeding tubes and lots of other uncomfortable things the 5 weeks he was in NICU. I didn’t care how much it cost, I didn’t care if every test was done “just to be on the safe side” I just wanted him to get strong enough to come home. BTW, after he passed a bloody stool (I know TMI, sorry) they did an XRAY “just to be on the safe side”. He had Necrotising Enterocolotis, a potentially fatal intestinal infection. His lab work was normal and he showed no physical signs of it. It could have killed him in a matter of hours. For those who care, he is doing GREAT with no lasting health problems.

Diane

July 28th, 2011
3:40 pm

My husband and I made the personal decision last year during my pregnancy that we were not going to have any invasive tests (ie: CVS, amniocentesis, etc) due to the risk of miscarriage. The pregnancy went great, there was nothing amis on our sonograms, and my son was born kicking and screaming last July. Two 9’s on his APGAR scores. We found out the next day that he has Down syndrome. To this day, I shudder at the possiblity of having found out during the pregnancy – would we have aborted? I really can’t say. All I can say is I’m glad we didn’t. My son is a wonderful addition to our family. Yes, he is slightly developmentally delayed, but he is healthy as a horse and a joy to have.

Reality

July 28th, 2011
3:40 pm

They are also taking a portion of the sample for a national DNA database maintained by the government. Any testing they do is just to further the profits of the medical industrial monopoly in this country. They really don’t care about your child’s health. If they did, they wouldn’t be subjecting them to a dozen vaccines before they leave the hospital and before their delicate immune systems are prepared for such an assault. Western medicine lost its way along time ago when the AMA siezed control of the state houses and forced their monopoly priviledge down everyone’s throat.

MomOf2Girls

July 28th, 2011
3:46 pm

@Vicki, that’s the reasoning behind PKU. However, the scope of the article is much broader than that.

MomOf2Girls

July 28th, 2011
3:50 pm

@Lisa, I am so glad to hear your son is doing well. As a fellow veteran of the NICU (my daughter was in for 6 1/2 weeks, on the floor an additional 3 before coming home), I know exactly how you feel!!!

FWIW, my “baby” is now 14 and doing amazingly well. People who don’t know her history have no idea that she went through anything abnormal.

Becky

July 28th, 2011
4:03 pm

Lisa, glad to hear that your baby is doing well..

I am very familiar with the NICU..I have a gret nephew that is now 15..He was born with Gastroschisis (intestine on the outside of his body)..When he was born, they gave him a 5% chance of living, today he is a happy, healthy teenager..

@Dinae..Bless you and your family..I guess until you are in that situation, you really don’t know what you would do..I’m sure that your son is a wonderful boy..

Lisa

July 28th, 2011
4:22 pm

@Diane, thank you SO much for sharing your story with us
@Momof2Girls, I’m so glad to hear that your “baby” is doing so well
@Becky, my neighbor’s little girl was born with gastroschisis but hers was a mild case. She came home after 16 days in NICU after being told she would be there at least a month

Darwin

July 28th, 2011
4:27 pm

The more you know, the better the odds are that your child will reach it’s full potential. What parent wouldn’t want that? Yes, total control of the results shouldvreside with the parent or guardian. Yes,costs must be contained, but IMO. Thebenrfits outweigh the problems

free

July 28th, 2011
4:28 pm

it seemed like a lot going on at the time but i’m glad the procedures are there. piedmont l&d rocks.

cp

July 28th, 2011
4:31 pm

My friend was offered additional testing (above and beyond what the hospital offers) for her baby when they “banked” her cord blood. It was free, so she figured, “Why not?” The results came in, and her baby had a VERY RARE genetic inability to break down certain proteins. Since the parents were aware from the start, their beautiful baby girl was able to grow into a gorgeous, sweet, (vegetarian) young lady who must have her protein intake carefully monitored. She has a normal, healthy life expectancy. Had they not known, brain damage and/or death would have resulted. Some believe that many SIDS cases may be children with these unknown disorders who are being given food that is killing them. Who would choose to remain ignorant about that?!?

WokeUpAt3

July 28th, 2011
4:58 pm

Yeh – they’re mean as snakes – say ONE wrong thing, and they call CPS on you for “inappropriate relationship” – this garbage actually happened to me when I was preggo and getting prenatal care – AND after I gave birth. Nurses want to regulate our lives. They told me explicitly to STOP breastfeeding because “formula is better.” I told her to go pound sand, and she left to report my attitude. I had a little chat with the doctor about liabilities, and never saw that idiot nurse again.

AKH

July 28th, 2011
5:10 pm

Theresa – You really need to provide more information. Newborn screening tests, which are referenced in the Wall Street Journal excerpt you included, are conducted around 48 hours after a baby is born from a blood sample taken through a heel prick. The screening tests are an invaluable tool for screening infants for rare metabolic and blood disorders so that early, life-saving treatments can be started. These tests have saved thousands of lives! Galactosemia,one of the disorders that Georgia has always screened for, for example, can kill a child within a month of birth – yet, treatment simply requires eliminating milk and milk products from the baby’s diet.

Many of the bloggers have commented about PRE-NATAL genetic screening, which is NOT the same thing as the Journal excerpt refers to. Nor do these screening tests have anything to do with vaccines!

I encourage everyone to take a look at the State website, which describes the disorders that Georgia tests for (yes, the State pays for this at no cost to the parents). Follow-up care and treatment for any of these disorders is handled by Emory University at little to no cost to the parents. Here is the link:
http://health.state.ga.us/programs/nsmscd/index.asp

JATL

July 29th, 2011
1:08 pm

@MJG -My FIL is in Oklahoma and has a house on Grand Lake. My two SILs and their families from California along with some Texas cousins convened there for a family reunion over 5 days. It was great, but roasting hot! Thank God for boats, lake, waverunners and pools! The boys had a blast! We’re all going to try to do it every year. We all had fun and the drive was okay. We broke each way with a nightly hotel stop. Even with 2 hotel nights, road food and gas we saved $1000 by not flying! Flying would have only saved us 3 hours each way as well due to plane changes and the drive from OKC or Tulsa to the lake. I also loved getting to take eberything we could possibly want or need!

We saw lots of great scenery -tons of farmland and crop dusting planes, and the boys got to go over the mighty Mississippi and be in 5 states in one day (that was big for the 5 year old ;-)

motherjanegoose

July 30th, 2011
8:25 am

@ JATL sounds like you had fun! I drove to southern IL this summer, for a meeting myself. I was in GA, TN, KT and IL in one day. It was an 8 hour drive and if I had flown, it would have saved only 1 hour. I understand! They do love their lakes in the midwest. My husband once took our son to meet his brother at Lake Texoma for camping and fishing, It rained most of the trip. Not fun for them.

Glad you had a nice trip!

It is surprising you were able to save that much money driving. Usually, it is just under $400 r/t from ATL to Tulsa non stop and that would be $1200 for four of you? But I agree a road trip is MUCH easier when you can avoid the hassle of the airport. Did you go through NW Arkansas? I lived there in HS and know it is not far.

motherjanegoose

July 30th, 2011
4:25 pm

OOPS…my math was not good today: $400 times four is $1600…. sorry!