Thursday, July 17, 2008

Genetic and prenatal testing

During my follow-up meetings with the nurse who is monitoring my pregnancy, my husband and I have been advised to do a series of genetic testing to determine whether we are carriers of abnormal genes - the nurse also expressed sincere puzzlement as to why we haven't done this before we were married.

You see, some Jews used to live in very small communities, which usually contributes to rate of genetic abnormalities. So now, when two Jews of similar descent marry, it is considered more high-risk - almost as if they are related - and they are advised to do genetic testing. But for heaven's sake, my husband's parents came from North Africa, and my family is from Europe! You can never know, but certainly there's no reason to act like we're in grave danger for genetic "defects". And besides, we're already married. Even if it turns out we are carriers of an abnormal gene, what would be the solution? Divorce? Have no children?..

We were also pressured into doing all kinds of expensive prenatal tests - as soon as we were done with one, we were sent to another. So, my husband put his foot down and said we are not doing the genetic testing - and there's no way we're going to travel every few weeks for expensive prenatal tests, either. If it meant possible better treatment for me or the baby, we wouldn't care about the time and money. But we realize that every test done right now, has a definite purpose: offering us the option of "terminating the pregnancy" if something is found to be wrong. It isn't an option for us, so there's no point really. So we decided to do, from now on, only those tests that can be done in the local clinic, without unreasonable costs (in terms of both time and money).

Please don't get the wrong impression: I think prenatal tests have their place; I don't think doing them is wrong, or indicates lack of faith. Some expectant mothers are very anxious, and doing the tests just to see that everything is fine can be very reassuring. But since it means lots of time and money for us (we live in a rather remote area), and not much can really be done right now, we might consider doing only those tests that are done in more advanced stages of pregnancy and might actually - if necessary, and we hope we won't need that - enable intervention that can help the baby.

One thing to remember is that tests aren't always accurate, and can result in a double tragedy if the mother decides to end her baby's life because she is told something is terribly wrong: not only the horror of abortion, but also the realization that this monstrous decision was brought upon by medical mistake. The danger of this is especially grave when we are talking about women who are under-educated and/or illiterate, and the doctor in question is arrogant enough to play God and doesn't bother to explain the reality of all possible risks, chances and complications.

My friend told me her neighbour was assured by doctors that her baby would be born without limbs, and was strongly advised to "terminate". Incidentally, she was a poorly educated black woman, and no one talked to her about odds, chances and risks. She was simply told: "Your baby won't have arms or legs. Go and end this now." Being a religious Jew, she refused, but you can imagine the grief this poor woman and her family went through during the next few months. She gave birth to a healthy baby boy, and after the joyous shock wore off, she brought her precious son to the doctor who had been monitoring her during pregnancy. "Here's my baby", - she said, "He has two arms, two legs and ten fingers and toes." The doctor went mute, and I really hope he learned a lesson and will think twice next time he advises a woman to have an abortion.

Also, this policy of making a healthy young woman feel as if she's in grave danger or seriously ill, while she is simply pregnant, really irritates me. I also have a gut feeling that since it's going to be our first baby, it makes us an easy target for brainwashing, since we might not have all the information of more experienced parents.

What stands behind this? Why are we sent to do any possible test? Where does our hard-earned money go, and who benefits from it? We pay a lot of money - surely it goes somewhere? I don't want to sound paranoid, but sometimes I feel we are manipulated to do many expensive and complicated tests which aren't really needed, don't help us and won't affect our well-being. Is our money used to support the horrific scheme of "weeding out" unborn babies who aren't "perfect"? Something to think about.

65 comments:

Mrs Amy said...

prenatal testing is such a minefield. We chose to have the bare basics done since we were both young and had no risk factors, also the results would not have change our desisions to carry the pregnancy through. I was blessed that my doctor is very low intevention so she was not in favour of extensive testing anyway. However I was recently accused of not having had antenatal care because I had not had an amniosentists (sorry for spelling!!). Now here in Australia that is a reportable crime under child abuse and this other doctor I was seeing for a completely un pregnancy related condition was going to report me. Thankfully my doctor was able to intervene! However it made me wonder why a doctor would think that such an invasive dangerous test was necessary in a pregnancy that was so low risk as mine. It must come down to money and the need of the medical community to control and pre dertmine outcomes. Perhaps we now have too much technology. Women were having babies long before all these tests were around and yes sometimes things went wrong but that was a part of the cycle of life.

Thursday's Child said...

God bless you, Anna! You are so right. While God has blessed us with talented medical professional, He never meant for us to replace Him with them.

Diana said...

I asked our midwife if any of these problems these tests are used for could be corrected. She told us no so I refused all genetic tests for my first pregnancy and now for this one as well. My sister's sister in law had genetic testing done with her first child and the doctor told her this child would be so severely developmentally damaged that they should have an abortion. Their daughter was born a healthy normal child with no problems what so ever and just had her first child last year. :) My husband and I will love any child we are blessed with regardless if he or she has problems or not. We believe all life is precious. I think pregnancy is a natural process and the less intervention the better. I don't even want Ultrasounds this time. I guess I am just a natural type of girl.:)

tales_from_the_crib said...

you aren't the only one, we also only test for things like gestational diabetes that can be helped by my diet and monitoring or things like that. I'm afraid I may be one of the women who encourage a "medicalization" of my pregnancys, as I cannot keep any food down without medication (and thus end up on i.v. fluids) and pass out during routine blood screenings while pregnant, thus scaring my nurses and end up on bed rest for complications from time to time. But I do understand this is not (nor should it) be viewed as normal. Wishing you a happy healthy pregnancy.

Kacie said...

My husband and I also chose not to have prenatal testing done, aside from routine blood tests.

At my last doctor's visit, she again asked if I wanted genetic testing.

"It's your last chance before it's too late," she told me.

Uh, thanks, but no thanks!

If the Lord wants to bless us with children who have Down syndrome or are born without limbs, He certainly has a reason for that. Maybe we'd be the best parents for the job!

Anyway, best wishes for a healthy pregnancy!

Anonymous said...

I know in Israel it's pretty much accepted in the medical world that the ultra-Orthodox aren't going to be doing much prenatal testing.

I'm shocked by the poster above who says an amnio is almost mandatory in Australia. I never had one; it carries the risk of miscarriage; I can't imagine why someone who isn't in a high risk category would be willing to take that risk.

However, I certainly don't think most doctors have some huge undercover scheme to clean up the population. Most women desperately want to know if something is wrong with their child. It doesn't mean they'll necessarily abort, but they want to know. The doctors are under an obligation to emphasize the importance of every test so that the woman can't claim later she didn't know, she wished she had, etc...

I never felt manipulated to do tests, and I've undergone 5 pregnancies in different areas of Israel. The money goes to cover the expensive equipment; and last I remember, the tests aren't that costly. The most expensive ones were advanced ultrasound reviews of all systems, and I think that cost about 1200 NIS ($300). Even that's probably free for some health care plans, regular ultrasounds are free, most blood tests are free....sorry, I don't see the medical profession reaping huge benefits from manipulating pregnant women.

And the doctor who suggested your friend's neighbour abort...well, I would publicize the story with his name. Shocking medical negligence. You can tell whether a baby has limbs via the simplest ultrasound. You are absolutely right, Anna, the less educated here are at the mercy of their doctor, as they aren't always aware enough to seek a second and third opinion (which in Israel can be done pretty much for FREE).

Gothelittle Rose said...

I am certain that my ob/gyn is pro-life. For one thing, as soon as my pregnancy test came back positive, he immediately did an ultrasound. With his extra nice machine, he was able to show me that little dot pulsing away... a baby gets a heartbeat at 5 weeks.

We get two sets of blood tests, one mandatory and one optional. Amnio is only done if the doctor is pretty certain somethings wrong and/or the mother is over 40. The mandatory test is for things like gestational diabetes or AIDS (AIDS is not mandated for the mother, but then the baby has to be tested, so I said "Bah, stick another needle in me and spare the poor kid."

For the second test, though.. I asked him if it would detect anything that could be corrected in utero and he said no. I asked if there would be any special treatment at birth necessary and he said no, not likely, between the first set and the ultrasounds they've pretty much got those situations covered. I looked him in the eye and said, "So basically the main reason to do this is if I'd want to abort if it came up positive."

He turned VERY uncomfortable and didn't know what to say.

I said "I'm not doing it," and he immediately said "Ok!" and changed the topic.

Samantha said...

First of all, let me say congratulations! I'm very happy for you and hope everything will go well.

As for all the prenatal tests, etc, I think the main thing is money. I'm reading the book Selling Sickness at the moment, and I'm astonished at the marketing tricks etc that the medical industry is playing on us. They want to make money, plain and simple, so the more scared they make us, the more tests and medicens they can sell us. Dokters, unfortunately, are also only people and the marketing is affecting them too. Still, trust your own instincts and intuition in this case. You seem sensible enough, and if you aren't sure of something, the internet is a great resource to research something (as long as you pay attention to who has written the info).

The Inept Aspirant said...

Mrs. Amy, How ironic that not having these tests done can be counted as "abuse" to the same baby that can be aborted without a second thought.
Personally, I don't go to a doctor unless there is a problem. Pregnancy is a natural process that we are perfectly designed for. Why treat it like an illness? It's scary to think there may be a scheme to weed out unborn babies who aren't "perfect" and it seems that may be the case. We all need to stop being bulllied by the healthcare field and by arrogant doctors who like to play God.
By the way, Anna, congratulations! I am so happy for you!

Susan said...

We opted for minimal testing: basic blood draws to determine iron levels etc., a glucose test in the 2nd trimester to screen for gestational diabetes and a 20-week ultrasound to convice my doctor that I did know EXACTLY how far along I was because I chart my fertility. (I must admit it was nice to get a sneak peak at the babe but really I didn't think it was necessary).

Although I'm in my late 30s and my insurance would cover amnio, CVS, and a host of other procedures we firmly decline anything that will not improve the health of the baby or mother NOW. Between the fact that most tests just give you odds not answers and the possibility of false positives further testing was pointless.

Tracy said...

My husband and I denied many tests that were offered to us all four times that I was pregnant also. We didn't see the point. Would we love the baby any less? No. Thankfully,we ended up with four healthy children, but even if they had birth defects, they would be our complete joy!

Julia said...

I agree with you. Birth is somewhat risky, but it's a risk worth taking. The story about the woman who was told her baby would have no limbs is very strange. It seems like a common ultrasound could show the limbs to even an untrained eye.

TheRetroHousewife said...

My cousin was told her baby would be born with no nose and some other horrible defects. It was the grace of God that saved her baby. She decided to terminate but the night before the procedure she got a call from a new doctor who was looking over her case file. The doctor asked her not to terminate, she trusted that doctor and now her son is 10 and perfect!

Liedeke said...

Well, isn't that funny. You, both Anna and Amy, seem to sum up many of the arguments that midwives, gynocologists and the general population of the Netherlands use against prenatal testing. Until recently, a Dutch pregnancy usually went by without any testing at all. One might have a ´term echo´ around twelve weeks if you weren´t clear on your last cycle. Only women over 35 had some other tests freely available. Lately, another echo has become quite standard, around twenty weeks. Other tests are still only available when the midwife finds a ´suspicious´ irregularity.

Indeed, the suggestion is to terminate if the tests show any serious defects. Still, I'm not sure how many people take that road. I, for one, would like to know beforehand about the chances of developmental and health issues, if possible - not to deny this child his life, but to absorb part of the shock before the baby is born.

Anyway, abortion up to 22 weeks of pregnancy is legal over here, but we still have one of the lowest abortion rates in the world. Perhaps it has something to do with the non-medical attitude towards childbearing.

Hope you're feeling well!
~Liedeke

Mrs Slaq said...

Child abuse for not having an amniocentesis? That's crazy talk! I told my doctor I would agree to have a quad screen (blood draw) and a level 2 ultrasound, both of which are covered by my insurance. He wants me to have those because of my age; I'll be 35 when I deliver. Beyond that, I told him I am not interested in having an amnio because my husband and I have no intention of terminating our beautiful baby, regardless of what might go wrong. God is in control.
I'm already in love with my child and I haven't even met him or her (we're waiting until D-Day to find out the gender)! And while we pray we'll have a healthy baby, if there is something wrong, would we love the child any less? Of course not! Ok, I'm going to stop now, I get kind of wound up on this topic.

Anyway, I think you've made a good choice, Anna. I hope things go smoothly for you and your hubby!

A Wonderful Life! said...

I agree-genetic testing is a waste of energy and money. God only gives you what you can handle. stephanie

Holly said...

Anna, I’m sorry you and your husband are under pressure to do these tests. That’s not the kind of stress you need during pregnancy! One possibility is that (at least in the US) doctors are over-aggressive in ordering these kinds of tests to prevent future lawsuits. The reasoning may be that they want to know everything so they can give full disclosure to the parents so after the birth they can’t be sued for complications. I’m not saying that this is reasonable and you and your husband should definitely have the last say in how you spend your time and resources. Best of everything!

Anonymous said...

we have 7 living children. the last two were born at 39 and 41. Fortunately my Dr. knows that we will only be testing for things that can help the life of mom or baby. I was a registered nurse before I was a mom. I think being informed and educated about what is being offered will help alot. Mostly you just need to be firm as to what you will be doing for the life of the child God has entrusted YOU with. We live in a world that does not value the lives of the children we carry and does not trust the God who sends the child he wishes us to have. Congratulations on your blessed condition. I enjoy your website. Carolyn

Green Eyes said...

Mrs Amy,

It's seriously considered abusive where you live to NOT get amniocentesis? Wow. That's really far out. Especially considering it increases the risk of miscarriage/premature birth. I can't think of any situation in which I would consent to it.

Anna,

I hear you on the testing craze. We plan to refuse almost all prenatal tests; we are young, seriously low-risk, and wouldn't terminate no matter what. Even some of the more benign tests/procedures haven't been shown to improve outcomes, anyway. There's a pretty good book called "Expecting Trouble: The Myth of Prenatal Care in America." I would imagine a good number of the tests performed in our two countries are the same.

Mrs. Anna T said...

I must echo everyone's comments about Amy's situation: outrageous!! Now, I think if you have lots of time and money and are very insecure and just want to know with high degree of certainty that everything is OK, go ahead and do a multitude of tests. There's nothing WRONG with that. But amnio carries a risk for the baby, and there's where I have to put my foot down. Even if I was *paid* a nice sum to do this test, I wouldn't agree to do ANYTHING that would endanger the baby!

Jera said...

I am so glad to read this post. I too declined prenatal genetic testing for the reasons you mentioned. And I wish I had declined other prenatal testing as well. It seemed as if every test they did just led to more and more tests, and every time they found something "slightly" off. Towards the end of my second pregnancy I just started refusing all extra tests and even skipping visits. I had my baby at home without any doctors present, and the process went very smoothly and naturally. It was so much nicer than being constantly checked internally, having machines hooked up to you, and needles stuck in you, and strangers observing you constantly. It was very peaceful and natural. I have learned the very important lesson that if I ever get pregnant again, I will consider very carefully which pregnancy "routine procedures and tests" I will consent to and which ones I will politely decline. I am pleased to see that you and your husband have been wise enough to do it this way from the start.

Anonymous said...

Anna,

I took a genetic course with a professor at my college who is a geneticist and worked for some time as a genetic counselor and even had it done herself. I do not know how things are done in Israel but in the United States most insurance companies won't even cover it unless there are risks factors: family history and/or the mother is 35 and older. In fact, it is unethical for a doctor to offer genetic counseling unless there are these risks factors although, of course, if the patient requests it the doctor may perform them; however, most doctors would advise against it unless it was an absolute necessity because there is the cost/benefit analysis with the procedures. Aminocentesis and other such procedures carry a risk of causing miscarriage and are only performed when the risk of miscarriage is below the risk of the child being born with a genetic problem.

If you have a doctor who is insisting on these if you do not have a family history (and you certainly are not over 35), I would quickly find another doctor as this doctor is unethical.

S

Kelly said...

You are absolutely doing the right thing by being skeptical of the barrage of tests that will be offered. Informed consent is so important throughout the pregnancy and birth process because the majority of medical communities try to "manage" you and your baby, instead of taking your whole well being - physical and spiritual - into account. If you haven't done so already, you may want to see if you can find books by Ina May Gaskin (http://inamay.com/archive/) or Henci Goer (http://www.hencigoer.com/). There is also good information to be found at mothering.com. My husband and I felt as you do, that no matter what the case, we would not terminate. Fortunately, I was able to find a group of holistic/alternative doctors who don't peddle tests like candy. They did offer and ultrasound, but when I asked if it was necessary, they told me no based on the fact that baby and I have all other indications of being healthy. Keep up the good work Anna! You're going to be a wonderful mom : )

Anna said...

My Aunt and Uncle were told that their baby would likely have downs syndrome, and that they should terminate the pregnancy. Being Catholic, they said, "no way." My cousin was born perfectly normal. No downs syndrome whatsoever. Doctors are wrong often enough not to go against your moral views on their advice.

Mrs. Anna T said...

I have a confession to make: I love ultrasounds. They are non-invasive, simple, quick, and allow you to take a peek at the sweet baby. :-)

Anonymous said...

First let me say that I think there is some value in prenatal testing, not from an abortion perspective, but from a foreknowledge perspective. I would much rather know that my baby might die within hours of his birth than to be surprised at the birth by this terrible news. I would much rather know there is a risk of my baby having missing fingers/toes than to discover and try to process this information in the already emotionally complex neonatal period. I would never terminate based on a genetic defect as long as the baby was alive. But I do think the information could be of use in terms of processing the grief/issues so that by the time the baby arrived, I would have a handle on my emotions and be able to get into the day-to-day of caring for my baby. Also, I’d have the advantage of being prepared for any medical care my child might need upon birth.

From what I can tell, and correct me if I’m wrong, your Jewish ancestry is Ashkenazi (because you’re from Eastern Europe) while your husband’s is Sephardi (because you told us that). Judaism is notoriously “in-bred,” in the sense that Jews are encouraged to marry other Jews and not to marry outside their faith. There’s nothing wrong with that, but it does make for a genetically closed off community. For that reason, there are certain genetic advantages (creativity, intelligence, and so on) that have multiplied in the Jewish community, and there are also some genetic disadvantages (like Tay-Sachs in the Ashkenazi community and beta-thalassemia in the Sephardi community) that have multiplied there. They are primarily of concern when Sephardim marry Sephardim and Ashkenazim marry Ashkenazim, and not when the two groups intermarry. I’m not a genetic expert by any stretch of the imagination, but I would think that you as a couple are not at increased risk of any genetic disease. It would be of much greater concern if you were both Ashkenazi or both Sephardi.

If there are abnormal findings in blood tests or ultrasounds, I think it might be worth it to have prenatal testing just for peace of mind and preparedness. However, I really don’t think you should do it if the recommendation is coming just because you’re both Jewish…especially because you’re from two totally different genetic communities.

But do keep in mind that there are other reasons to have genetic testing besides potential pregnancy termination, and that your doctor is not necessarily encouraging you to kill your child if you should wind up with an unfavorable result.

Anonymous said...

I didn't have any of the genetic testing done, just the routine blood tests for myself. My husband and I love all of our children so much - should we be blessed with an unhealthy child, this would never change. I'm with you that I don't like the idea of weeding out the "less than perfect" children. For one thing, I have been told so often how these genetic tests fail and give inaccurate readings, and the other - plainly - every child is a gift from God. Who are we to choose who should be here and who should not?
Hope you are feeling well today.

Emmy

Mrs. Anna T said...

Anon,

Like I said in the post, I think prenatal testing has its place - when there's an indication something might be wrong. Yes we can never know everything. Yes it's better to be prepared. But from here to making a healthy young couple feel like they're hanging one-armed off a cliff, just because they are *expecting a baby*, the road is long.

I'm technically Ashkenazi, but genetically almost as good as a convert. From my grandparents, only maternal grandma is Jewish. Therefore genetically, you could see our union almost as "intermarriage". Most genetic problems exist in those ultra-Orthodox Jewish communities who continue to marry within themselves even here in Israel. If all Jews freely "intermarried" (Ashkenazi marrying Sephardi or Yemenite), most of our genetic problems would be solved.

Also I support genetic counseling *prior* to marriage, if there's high risk. However if a couple is already married, that's another story.

Elizabeth Joy said...

Congratulations! I am so happy to know there are other women and men thinking carefully about birth. God made birth and made women to give birth. I have learned that most of the medicalization is unnecessary and can even be harmful to the baby and the mother. Now is the time to research birth, educating yourself about all the pros and cons of procedures. There are some excellent books out there. One that comes to mind is "A Thinking Woman's Guide to a Better Birth." My midwife told me that women are better prepared to deal with defects in the baby right at birth. If you learn about them early, you spend months worrying, and worry/stress hormones pass through the placenta and the baby receives them and is stressed also. I choose to forgo all but the blood tests and other non invasive type tests that check for the mothers' continuing health. I also chose to learn the babies gender when it was born. I felt that if God wanted me to know earlier, He would have arranged for parents to naturally have that knowledge earlier. There is a huge thrill that comes at birth when you meet your baby, hold him or her in your arms and meet them and love them, knowing it is a gift from God to you. You know He does all things well. And He would not let an unhealthy baby be born to you without His permission. Even a defect would be a gift to you and in time you would know the preciousness of that gift.
Feel free to ask me questions on my blog anytime. I have a lot of books on hand and could look something up for you or share what I have learned. You really seem to be doing the right things.

Anonymous said...

I'm the same long-winded anon from above. ;) To be clear, I don't disagree with you at all. I'm just pointing out the potential value in genetic testing (CVS, amnio, whatever), unrelated to abortion.

You are young, healthy, have no family history of genetic issues, and have presumably had clean ultrasounds. I don't see any reason to even suggest that you should allow your baby to be tested. My comment was more directed toward those who seemed to think there was only one reason to be tested - if you would terminate based on an unfavorable result.

I think you're doing the right thing for your situation, but I'm just pointing out for some of your more adamant commenters that CVS and amnio do have legitimate purposes beyong perpetuating a culture of death (though sometimes they do that too, which I absolutely deplore).

Sorry if I wasn't clear in my first comment. I'm proud of you for being non-interventionist and for declining unnecessary medical tests. Go Anna!

Now I'm just wondering what your birth plan looks like and whether or not it's equally, gloriously non-interventionist. :)

Mrs. Anna T said...

I only learned what a birth plan is not long ago, when a friend who is due in the same week as I am (isn't that cool?) sent me hers. I liked it and can now use it as a template to work on mine. More on birth, see next week...

~v said...

This is a very difficult and personal area. My sister went through genetic testing and discovered her future baby would be born with an anomoly - she regretted finding out. Every doctor's appointment involved the doctor STRONGLY advising termination, to the point that she was left in tears. She changed doctors THREE times before she found a more sympathetic one. When the baby was born, NO EFFORT was made to suction her nose so she could breathe better, to clean her or to feed her. The nurses seemed surprised that my sister wanted to feed her daughter! She only survived 3 weeks and died of a COLD because doctors didn't see the point in helping this baby. She had an eye infection soon after birth and the doctor was at a loss as to why my sister bothered to bring her daughter in. It is infuriating to think about to this day.

If you feel strongly against abortion and know that you would keep your pregnancy no matter the outcome, I would advise against genetic testing. Had she never been tested, my sister would have received medical care without the stress of having doctors tell her she was a fool and her daughter would have received better medical care at birth. We believe that ALL people are children of God and my sister refused to be the one to determine her daughter's fate.

Incidentally, there ARE long term survivors of this anomoly, but not many because most doctor's don't see the point in even trying!

wildwmom@yahoo.com

~v

Lisa said...

If there is any possibility at all of a genetic defect they try to do genetic testing. I'm 7 months into my second pregnancy, and they pressured me to get genetic testing because my husband is an ashkenazi jew. We found it very ridiculous because I'm not. They tried to make us feel guilty, making it seem as if we didn't care about our baby. Even though the possibility of me being a carrier is slim to none. I wouldn't worry bout it too much. I think it is just their policy even if there is only a very slight possibility.

Sydney said...

My parents refused prenatal testing with all 5 children in our family for the same reasons you mentioned. It made them stick out for sure, but, in the end, they had a baby and it didn't matter. :-) You are very blessed to have a husband who is very involved during the whole process and is willing to "put his foot down" in such a case as this. I have heard many stories, similar to the one concerning your friend, where the parents were advised to terminate because of health defects, but they didn't and they ended up with a perfectly healthy baby! :-)

I really enjoyed reading your thoughts on this issue. I haven't met very many who agree on this issue. You and your husband are VERY wise in many ways compared to most newlyweds. God bless!

Shalom!

Anonymous said...

Two things I want to share as a mother of four who has pondered these things.
#1 God's grace is extended to us at the exact time that we need it. There is a reason that HE made the womb a secret place. He knows that the moment of birth will be the perfect time for us to meet our babies and learn of their needs, whatever their health status. Those hormones released at that time are from HIM and will help in coping with any issues.
#2 All life should be celebrated. You seem to recognize this. If I gave birth to a perfectly healthy baby who later at age 3 was diagnosed with cancer, I would continue to celebrate that child's life for as long as I could. Not that there would not be heart-ache involved, but that is the choice we all make when we welcome children into our lives, we open ourselves to the possiblity of heart ache. And we decide that in spite of that possibility, it will be worth it anyway. Their lives are worth it. So whether a diagnosis comes at age 3 or 30 or even before birth, we know that every day with our child was worth all the pain. Here is a link to a situation in which the parents chose this outlook.

http://www.youtube.com/watch?v=th6Njr-qkq0

Beth

Michelle Potter said...

I'm another one who doesn't do any testing. Honestly, I don't see a doctor at all during pregnancy unless I have a problem. During this pregnancy I saw a doctor once, and had one ultrasound.

I don't know how it is in Israel, but here in the US we have another fight at the end of pregnancy even after we are past the whole prenatal genetic testing stuff. Many of the ultrasounds and tests done toward the end of pregnancy seem to have no purpose other than to scare mothers into a c-section or induction. I'm currently in a group online for women who are giving birth in July 2008, and I can count on one hand the number of women who haven't been warned that they'd better not go past their due date because their baby is going to get so big they won't be able to give birth. What utter nonsense! Virtually everyone who goes past their due date gets an induction scheduled within a few days. As a result of the push for inductions and other interventions during birth which increase the risk of c-section, and the push for c-sections themselves, the c-section rate in this country is over 30%, and in my city it's close to 50%! The World Health Organization recommends a c-section rate of 5-10%.

For me this issue hits very close to home as I had an unnecessary c-section with my first child. Ever since then I have had to fight for the right just to give birth to my children normally. In the US VBACs are considered dangerous and most doctors will either refuse them outright, or attempt to subvert them.

Right now, I may be in labor. I can't afford a homebirth midwife, and the local birthing centers are not allowed to do VBACs. But I have to be careful about how soon I go into the hospital because I don't labor as fast as they require. (I get there eventually, but it takes me longer than they like.) If I go in too soon, I will spend hours fighting to not be given drugs to speed up my labor. I know that if I give in to the drugs and they don't work, I'll be labeled "unable" to give birth and coerced into another c-section. I know this because I've gone through it again and again.

I hope things aren't like that in Israel.

Heather said...

Anna- I agree with you 100% testing does have a place, but for me I did no additional testing that wasn't necessary (normal blood tests) and we did all the ultrasounds because it is so special to see the little one and know that everything is good. I would have done additional testing if after the ultrasounds they had seem something that was necessary but wouldn't have terminated. To me even if a baby has one breath and is loved for a minute of it's life that is better than nothing at all. I do realize that not everyone has the ability to deal with such things. I was blessed by never having to make such a decision.

May your pregnancy be blessed and everything go smoothly.

God Bless
Heather

Bethany Hudson said...

I agree with you, Anna. We refused all prenatal testing that could only result in worry and a possible "termination"--which we would under no circumstances carry out. Why worry unnecessarily when false positives are so common, anyway?

I also get so fed up with a healthy pregnancy being treated like a disease. It drives me crazy! I got sent to all these VERY expensive ultrasounds (fortunately, our insurance completely covered it; we are very blessed with that) during my pregnancy, because my baby was supposedly too small. After about six of them, I finally turned to the doctor and said, "Why am I here? What exactly is wrong with my baby?" Well, nothing was wrong but he insisted that something COULD be wrong. That was it. I'd had it. I never scheduled my next recommended appt. At 40 weeks, I gave birth to a perfectly healthy 8 lb, 1 oz baby girl! (I'm only 5'2'' and 106 lbs--130 lbs by the end of my pregnancy) So much for the doctor's advice! Fortunately, my midwife (who I switched to after the ultrasound incident) fully supported my own attitude toward my healthy pregnancy and didn't worry me about low birthrates and testing.

~Bethany

Mrs W said...

These and more are all VERY good reasons why we home birth.

Cindi said...

Good for you! I know all cases are different, but they told us with both our sons that we needed to terminate the pregnancies. Our oldest wasn't even suppose to be a viable pregnancy. He turned 19 this year and is very healthy! Our youngest was suppose to have some terrible disease and not live to be a year old. He will be 11 next month and is oh so healthy. I am so glad our beliefs kept us from listening to their test results.

rylie's mom said...

When I was pregnant with my daughter I had two ultrasounds and blood work done. The doctor told me everything looked perfect. One hour after my daughter was born I found out that she had Down syndrome. So ultrasounds and bloodwork are not always accurate. If I would have known before she was born I would NEVER of had an abortion, but I think it would of been nice to prepare for her birth. Testing is ok in my book , but what scares me is that all of these test are being used as elimination tools. 90% of parents who find out prenatally that their child has Down syndrome end up getting an abortion. This breaks my heart! If people only knew how wonderful people with Down syndrome are. I am so blessed to have my daughter, she is healthy and smart ! This whole issue is very close to my heart. If anyone is interested here is a post I wrote on my blog regarding doctors not supplying accurate info to their patients
http://karyces.blogspot.com/2008/04/created-for-good-purpose.html

Thia said...

Tip: Stay away from mainstream pregnancy boards.
I too decline just about all testing. I let them do an initial blood draw at the beginning since in my state HIV testing is mandatory (if you don't do it, you can't hold your baby until the baby has been tested-that should be a crime in my opinion). I think that same draw checks my immunity to certain diseases, my iron levels (that is important to know). After that, I let them do a sono or two. I do the glucose test and the GBS. I decline everything else. For reasons your other readers have already discussed. I really encourage you to do lots of reading (and your dh of course). The whole medical system in the world seems pretty much a money run scam to me. Sad, but true.

Some of my fav books:
*Anything by Dr. Sears, especially the pregnancy book, birth book, and baby book.
*The Thinking Woman's Guide to a Better Birth by Henci Goer
*Natural Childbirth the Bradley Way: Revised Edition by Susan McCutcheon-Rosegg, Erick Ingraham, and Robert A. Bradley

I think I used some others during my first preg, but they're packed away and I can't remember.

Melisa said...

I had 3 babies in the 1st trimester after having my 1st two children. Each time I went in, my doctor wanted to know if I wanted to have this that and the other early testing. I told her each time - no. No matter what we would have the baby if there was a problem, so there was no point.

With this one, the only question she asked was if we wanted genetic counseling (since I am considered maternally "old" now at 40). We told her no - again that it would not change our minds. I actually expected her to at least push for the nuchal translucency test like she did the last time. She did not even mention it this time (perhaps she finally got the point).

The only testing I am ever willing to let them do is non-invasive testing. Meaning if it is not checkable via ultra-sound or blood testing, it is not happening. I humor my doctor and let her do the AFP blood test. I know, given my nurse's comments, that they were totally expecting it to come back positive (my age would skew those results horridly, lol), but it was negative. I told her I had not expected it to be positive and that even if it was, this child was a blessing from G-d to be loved just as much as the next child. I have had 3 friends who have had FALSE Positives on this test (and they, like I would, refused to allow the amino - the risk of a miscarriage was higher than the risk of a trisomy issue). They all 3 have perfectly normal healthy children.

So, feel free to keep telling them "NO". You are correct - most of the early testing is to give people the "choice", under extreme pressure sometimes, to abort the baby. Too many people have been given "false" information about defects that were not there. Thankfully, many of those same people have chosen to let the pregnancy continue - and have perfect children. Some do not have perfect children, but it is all in G-d's will for us.

May the Lord bless you and your pregnancy. Praying for a healthy pregnancy and delivery for all of you!

Anonymous said...

I don't understand people (see above posters) who say 'if G-d had wanted us to know xyz he would have let us know'.

Am I to assume these same people refuse all modern conventional medicine? Never do an x-ray? No blood tests? These all uncover hidden health problems, just like ultrasound or amnio. I don't see why finding out whether a baby has issues, or its gender, is any less ethical than an x-ray at the dentist.

G-d allowed us to develop all this knowledge in order to keep our minds and bodies healthy. Science and medicine need to be put to good use, not ignored!

Tammy

ruizbe82 said...

Doctors don't know everything, as we are sometimes taught to believe. And they don't always know what's best, either.

I think having a child the natural way is the way to go, including no tests or other interventions unless something feels wrong. Anyway, that is just my opinion, but since I've never been pregnant, I have no experience in the matter. :)

Mrs. Anna T said...

Certainly, "natural" and "no intervention" doesn't necessarily mean "more Godly". Who, if not God, enabled us to find out so many things and develop such advanced technology that can save human lives? Thank God we have hospitals and medical equipment. I've seen babies who wouldn't have survived without ICU. If something is suspected to be wrong, I believe we have moral obligation to do anything necessary to take care of our health and the health of our baby.

But like Tammy said, science and medicine must be put to GOOD use, which they often aren't. For example, using discouraging test results to pressure parents into having an abortion is NOT good use. In such cases, our moral judgment, religious convictions and common sense step in.

Neuropoet said...

My husband's parents were told all sorts of things about him - that he would be blind, deaf, never walk or talk - the works. They refused to abort him - he was born in 75 just a couple of years after abortion became legal in the USA. He was born about 2 months premature (due to complications with his mom) - a miracle baby - he used one of the first incubators in the country in a military hospital - but all of his "issues growing up were related to being a preemie. He is fine now - he played football for years, was an eagle scout at 14, is extremely intelligent --- absolutely none of the horrible things that were supposed to be wrong with him happened - even though he was born early. Doctor's try to say that testing has become more accurate since then, and I suppose it has to some degree, but false positives are still all too common. I know a young woman who had her first baby when she was 15 ten years ago. Supposedly her daughter was going to be down syndrome - she was born completely normal after her mother decided not to go through with the abortion. Her beautiful baby girl was born three months before my oldest son's birth...
I think you and your husband are being very wise in limiting pre-natal testing to only what is really necessary. You're already wonderful parents! :)

~Jenny

Samara said...

I'm not going to read every comment above so sorry for any repetition here, but in the US, birth-related care and heart attacks are the ONLY medical issues on which hospitals can reliably turn a profit. Therefore, tests and interventions for pregnancy and birth are institutionally encouraged and the health industry and medical groups hire lobbyists to push for the legal requirement for insurance companies to pay for such tests and other unnecessary interventions. Of course, once insurance companies are required to cover a particular test, the impression is given by doctors and hospitals that such frills aren't frills but "privileges" that should be used whenever possible... driving up health costs and insurance premiums and then hospital costs... enter the vicious cycle! It is certainly daunting to try to become an aware consumer in the face of such institutionalized bureaucracy.

Another point I'd like to make is that doctors are fond of pointing out that such-and-such test is "99% accurate". In reality this is very misleading: 99% accurate is 1% wrong. For example, if all women are tested for a condition that occurs once in a million women, true accuracy would be that one in a million women tests positive. With a 99% accurate test, that is TEN THOUSAND positives, all but one being a false result! Now think of a first-time expectant mother, ready to trust her doctor with her child's life, who receives at the very least a handful of tests, none of which are even close to being 99% accurate anyways- more like 80% accurate (20% wrong). Perceive that vast and horrible picture? Ugh, it is sickening. I know many people who lived through experiences like some of those noted by other commenters: told things like "there's no baby in there, no heartbeat, you need a D&C to clean out the abnormal tissue" but insisted on getting a second opinion and lo, there's a living, healthy baby on the ultrasound. Horrors.

Now, both my parents are in the medical field and I understand perfectly that they play vital and important roles, save lives and improve the health of many. But IMHO and in their opinions too there is too much of an emphasis on believing that one should be letting the health system "control" the pregnancy and its outcome, as if it is in the hands of anyone but the Lord, and that that outlook is one based not in love but in money.

Sheri said...

Anna, this is my first time to your blog since you posted "your baby news!" CONGRATULATIONS!!! Oh I'm just thrilled for you and your husband and will be praying for a wonderful pregnancy (I love being pregnant!), a great labor/delivery, and a very healthy precious little one. Again, congratulations!!!

Anonymous said...

Firstly, Congratulations Anna, how beautiful.

I have a different point of view than most of your responders, I think. I have five children and I had every pre-natal test available. Terminating was not an option for us, but if there was anything wrong we wanted to be as prepared as possible. If the baby was going to need special things/help or extra time in the hospital or anything at all, we wanted to be as ready as we could.

I am not reccomending pre-natal testing, I am just telling another side of it.

Melody

Anonymous said...

I've never been pregnant, but I ever do, I will just take the basic testing. A while ago I heard from a pregnant friend that she did all kinds of testing, possibly like the various tests you and your husband are pressured to take, I thought it's just wow.. Too much for me. My thought on it is simple, pregnancy is a blessing and God always has a good plan in store for us. Why complicating it with fear (or better called "concern" in modern society.)

Maybe I am too much of a simple person, but I'm contented with it.

I pray for you to have a healthy pregnancy, healthy you, healthy husband, and healthy baby-to-be.

W

Joy of Frugal Living said...

I have experienced this sort of pressure too. Having had three miscarriages, they just pile it on. I've had lots of tests and none indicated anything wrong with me. Even among those who have three miscarriages, for a third of them it's just random chance - and we know two of mine were this sort of miscarriage.

Yet, they still keep pushing for more totally unrelated tests - just in case something different happens next time, incredibly unlikely things. I would do anything for a healthy baby, but I don't think torturing me (some tests offered are very nearly surgery) will help my future children. After much discussion, my husband and I have decided not to go back to the specialist until I'm pregnant again. Then we'll have the fun of deflecting the abortion-oriented testing yet again.

Fortunately, my current regular ob doctor is much more willing to listen to me about this sort of stuff than the folks I had earlier on. Perhaps it's partly because I'm a more experienced patient too, but I'm finding it easier and easier to put my foot down. When I get overwhelmed, my husband is there to do it.

I think it has to do with money for the doctors and with the fact that people are afraid of the unknown. I think it's natural to not know everything. For example, would I have been happier to know any of my three babies was going to die? Of course not. I got to enjoy and cherish the time I had with them and I wouldn't trade that for anything. The same goes for everything else - if it's not going to help the baby, it's not something I want to do.

It's tough making all these choices, but I'm confident you'll do a great job. You think about things so much, that's clear from your posts. You're being a fabulously proactive and caring mommy already.

Best wishes,
Jennifer

Anonymous said...

Hi Anna,

My parents were highschool sweethearts who aborted my Brother when they were 15. They never, ever got over it. My twin died in the womb (I was their next born, scary I could have been the one aborted. I sometimes feel guilty about it) and they were told with my youngest Brother to abort him. That he would be severly retarded and every other thing they could think to scare my parents to death. They were only 23, had little to no money and were not Christians at the time. They stood firm because of their first abortion and my Brother was born just fine. He was tongue tied, and had lazy eye. Both fixed and he suffers from some dyslexia (so do I). However, he has a genius IQ. Doctors are NOT God and the Good and Almighty Lord we serve has a plan for EVERY Baby he sends us. He will send the provision and everything you need...when you need it.

Stand fast and pray hard for your DH to have disernment for this situation. I will pray with you guys.

Many Blessing s:)
Ace

Dereschai said...

Firstly, congratulations on your good news :)

I've never been pregnant myself, and am not a healthcare professional. However, I'm from a large family (youngest of six!), have two young nieces, and recently studied problems in mammalian reproduction as part of the final year of my neuroscience degree. So now you know where I'm coming from... I strongly disagree with your statement that prenatal testing is primarily offered to "search and destroy" abnormal foetuses. Some 8% of all pregnancies are described as "at risk": for example the mother might be very young or old, there could be a family history of some disorder, drug abuse, or a blood relation between the mum and dad. Of this number who find some problem through testing, 7% choose to terminate the pregnancy.

The remainder can be offered therapy to correct the baby's problems in the womb, for example by surgery, drug or hormone treatment, or soon after birth. The parents may also be fully prepared for life with their child's condition, by trained genetic counsellors, and by involvement in support groups.

At least that's how it works in theory. I'm well aware that doctors are only human and misdiagnose and offer unhelpful or upsetting advice-- but if they're worthy of the title and the trust invested in them, this shouldn't be the case. If you're unhappy with a doctor, change them! I'm also aware that I live in a country with a national health service, and it probably doesn't seem worth the money and hassle to couples who luckily don't have any problems.

Sorry for writing such a long comment, but I've seen this sentiment repeated so often and it gets me every time. It concerns me that potentially, a pro-choice couple carrying a risky pregnancy could be persuaded that prenatal testing will inevitably lead to being pressured into abortion in the event of a positive result, which isn't true.

Anonymous said...

Hello there,
I have three children and just had our last baby 9 months ago when I was 36. According to the Doctors I was in the high risk catorgory of having 'a number of things' go wrong with the pregnancy and myself. I was offered an amniosentists but refused as this test can also make you miscarry your child. (Which they have to tell you all the risks for before you consent to having it) It is not a compulsory test. But my doctor knew that I would not abort my child anyway so no point in doing this test. (but she still had to offer the test) I had my simply glucose tests and blood tests for iron etc, etc... but other than that We simply put our trust in God and took one day at a time and I enjoyed carrying my new baby. I saw no point in stressing for the entire length of the pregnancy of what could be...
My daughter is 9 mths old now and is just beautiful. I love Prov 3:5 & 6.
'Trust in the LORD with all your heat and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.
Congratulations to your and your husband on your new blessing.
Enjoy this exciting and special time - it goes so quickly.
hugs
Helen (Queensland, Australia)

Gothelittle Rose said...

"Am I to assume these same people refuse all modern conventional medicine? Never do an x-ray? No blood tests? These all uncover hidden health problems, just like ultrasound or amnio."

Ultrasound I don't think anybody's had a problem with. Amnio on the other hand...

As I said, I asked my doctor when he offered the test if it was going to uncover anything that would change the birthplace or birth method. Would they need to have a specialist on hand that they otherwise would not? Would they need me to go to a different hospital? Follow a different procedure? The answer was no every time.

That's a good part of why I refused.

It's one thing to find out you have a problem that can be treated, like checking for gestational diabetes. It's another to find out that your baby might, but might not be born with some sort of defect, but there's really nothing anybody can do about it. Oh, btw, and you've just increased the likelihood of your baby having a defect or dying by doing this test.

Who could equate that to receiving diagnostic medical care for real problems that can be treated and (in many cases) cured?

lady jane said...

I experienced various challenges t/o pregnancy and am thankful I had a doctor who was conservative in his approach to add'l care. However, due to the challenges a few ultrasounds and ultimately an amnio was required, for the health of both my baby and myself as I experienced a severly toxic pregnancy. The amnio was performed the day before she was born, to determine her lung maturity which would then determine post birth care. That night, after 2 weeks in hospital to monitor the baby and me, my organs began showing add'l stress and a few began shutting down, which is a good reason to perform an emergency C-section, which they did and which was required to keep me alive at that point. Giving birth healed my body; 6 weeks early (we knew the exact conception date due to medical intervention) and healthy! Me? In ICU for 3 days then bed rest for a number more and anti-seizure meds for 6 weeks.

While bells and whistle tests aren't typically necessary or advised for a routine pregnancy, I sure am glad it was a necessary course of action for a high risk pregnancy and birth like mine.

It's important for each woman (and husband) to do research and 'take ownership' of their medical care, walking the path of pregnancy with increased knowledge to make informed decisions.

Bless you, AnnaT.

Anonymous said...

The Australian Constitution specifically says there can be no form of civil conscription for any kind of medical procedure. This means you can refuse any form of medical treatment or vaccine. The Australian Constitution is available to read on-line on many websites.

Seung said...

Amniocentesis and chorionic villus sampling happen to be invasive tests that carry their own risks: there is a nonzero possibility of adverse effects, ranging from minor ones to major ones -- including missing limbs and missing lives. The "risks", therefore, must outweigh the "benefits" before a clinician can go ahead and advise for such a test. Therein lies the problem: we advise for tests based on certain criteria; advanced maternal age is one of them, maternal diabetes is another, et cetera. You've probably heard of Down Syndrome before, for instance -- trisomy 21. Some of you will probably be under the impression that this is something that happens mainly to babies of older women; while this is true, it might also give you pause to consider the fact that *the vast majority of Down Syndrome babies are born to women below the age of 30*.

To pass on a maxim that one of the best physicians I've ever known often said to me when we were on rotation together: if you will not take concrete action based on the result of a test, you've just wasted time and money. Worse yet, you've subjected your patient to a procedure that has side effects -- some of which can be deadly, depending on the test.

Think on that.

Karen said...

I am very against genetic prenatal testing. I have heard the arguments that it supposedly prepares the parents better for life with a special needs child, and while this may be true a fraction of the time it certainly does not justify the FACT that in my country 90% of babies diagnosed with Down's Syndrome prenatally are aborted. Considering that these diagnosis are never made before 12 weeks, that is a heinous fact indeed.

And you are absolutely right about them being inaccurate. The AFP test for one is accurate less than 50% of the time. Flip a coin and save your money!

Karen said...

I also wanted to mention that a few tests, such as Chorionic Villus Sampling (CVS) and amniocentisis are risky to the baby. They can cause infection or even fetal death. While this is relatively rare, it is actually about the same as the danger to the baby during the actual birth!

Beverly said...

I personally do not believe in doing prenatal / genetic testing, because to me what that's really opening the door to is eugenics and the option for the mother to abort the baby, which I am firmly against. And as someone already said, they ARE risky to the baby! It's not as if this is happening in a vaccuum.... there are very serious risks and these tests can even lead to death.

God knows what He is doing; trust in Him.

To me, what these tests do is demonstrate our insecurity and lack of faith. While they could be used to prepare, more often then not they seem to be a way to distance us from God's will for us.

Coffee Catholic said...

You're right, Anna ~ all of these genetic/defect tests are there simply to make money and then to bully a woman into terminating their pregnancies. My husband and I told the doctor, "If this baby is going to die, they'll die in our arms after they are born. If they have birth defects or mental retardation we'll love them just the same!" Our doctor is a nice normal man who respected our decision and the midwife also respected our decision and so we did not feel pressured to have these tests. I think that we are very luck in that reagard!

Erin_Coda said...

I don't have children, but I am familiar with this issue.

I think that, at least in the US, a lot of the emphasis on testing comes from two things:

One is the tendency to blame the dr. and take him/her to court if anything is wrong with the baby-- so the dr. must be shown to have done every test, even if there's nothing to be done about the outcome.

The second factor is the emphasis on "wellness" rather than health, that there is some extra level of perfection that we can draw near (but never quite attain) if we only take XYZ supplement, drink only natural water, etc. Combine this with new mom's natural tendency to want to maximize her baby's chances of full health, and it's a recipe for lots and lots of extra tests.

The testing is actually fairly controversial-- in my graduate genetics class, we discussed factors such as false positives, false negatives, and whether the knowledge will be likely to improve the baby's or mother's health. You'll be happy to hear that we were told a dr. should NEVER recommend termination on the basis of a genetic abnormality. Though I don't know how that bears out in the medical community.

mom_of_3 said...

Hello,

I guess I just wanted to add that the majority of your commenters have not gone through a genetic problem with their children. My twins weakened and died, one after the other, due to a genetic condition that we discovered after birth. I am grateful for all the ultrasounds I had beforehand because their time in my womb was most of the time I had with them before they passed away. Sometimes genetic testing gives you the opportunity to prepare for those things in life that you would never imagine could happen to you.

Mrs. Anna, I wish you a blessed pregnancy and a sweet, healthy baby. God is so good!