A fine post by Paul Tuns. Especially this:
The problem is that pregnant women are routinely tested to see if their child has a genetic anomaly for which there is no treatment. Doctors, who can’t stand to do nothing, offer what they can: abortion to get rid of the “problem”. This leads to a vicious cycle; I’ve talked to doctors who are concerned that with fewer Down Syndrome children being born, there is less impetus to do the type of research which could enrich the lives of those who survive the womb for nine months because there isn’t enough demand. Future lack of resources to help parents of Down Syndrome children will only encourage more parents to abort such children in the future.
Testing to see if the child has some “problem” for which there’s no treatment is one of those “illusion of technique” traps – better living through science (except of course for those whose lives are cut short in the name of perfection). Expecting mothers, not all of whom are geneticists, are often made to take those tests as a matter of routine because that’s just what’s expected, especially if you’re an older expecting mother. But those tests that determine (that’s assuming the tests are accurate, not an altogether water-tight assumption) whether a fetus has a condition for which there is no treatment are not medicine.
_____________________
Andrea adds: This breaks my heart.
The Washington Post cites Skotko’s research indicating that 92 percent of women who learn they are carrying a baby with Down syndrome choose to abort the pregnancy. That is more than nine out of ten.
Does anyone know when it comes to ultrasounds then, what is the point? Because I’ve always said I would not have one, period. But are there any conditions that can be viewed in utero for which abortion is not the answer? (As in, if you see something in the fetus early there is a bona fide treatment?)
______________________
Rebecca adds: “Does anyone know when it comes to ultrasounds then, what is the point? Because I’ve always said I would not have one, period. But are there any conditions that can be viewed in utero for which abortion is not the answer? (As in, if you see something in the fetus early there is a bona fide treatment?)”
I maintain that there is good reason to have these tests – maternal blood screening and ultrasound, which are non-invasive for the baby – even for people who would not consider abortion no matter what the result. The major downside is false positives for problems, but a good obstetrician or radiologist will explain what are the odds of a false positive (and negative) to women being tested. There are good medical reasons for finding out about problems in utero. In some cases, babies can have surgery prior to being born, which can repair some otherwise fatal defects. In others, when parents and doctors are aware of major problems, they can do a C-section and transfer the baby to immediate surgery; I know a healthy teenager who had a severely malformed abdominal wall, and since it was detected in utero, this is what happened. If he’d gone through a vaginal birth, or not been taken immediately into a prepared operating theatre, he would likely be dead. Down Syndrome in particular causes a higher risk of heart defects that can prove fatal at or shortly after birth, so it’s good to know if your child has this problem, so you can ensure optimal care at delivery.
The other big reason in my opinion is to prepare yourself psychologically. Sarah Palin talked about being overjoyed when her son was born; she’d already come to terms with his medical condition, so the birth was a joyful occasion, not mixed with grief as it would be it were also the occasion on which you first learned your childhood had a lifelong disability for the family to cope with. When major surgery is needed right after birth, it’s a lot easier on the family if it’s not a surprise, if they know what to expect and have made arrangements to help them all get through it. Coping with a new baby is stressful and exhausting even when everything is perfect; coping with major surgery for your newborn would be a excruciating. If that could be mitigated by some knowledge in advance of what the risks are and what’s likely to happen, I’m all in favour.
I fully support the choice to refuse prenatal testing if that’s what the mother wants. But diagnostics themselves are not the problem, it is the mentality of the people within the system and how they use diagnostics. These tools can certainly be used to mark some unborn children as unworthy of life. But they can also be used to ensure best outcomes and the smoothest transitions even for babies with severe problems. There is no inherent contradiction between being pro-life and being in favour of prenatal testing.
(I don’t discuss amnio because that, unlike maternal blood screening and ultrasound, does present a risk to the baby, with between .5% and 2% of amnios causing miscarriage, depending on when, how and where it’s done. That’s a whole separate set of ethical issues.)
Further,”as commenters point out, there are other reasons that don’t involve defects or disease. The reality of medicine today is that, while OBs rely less and less on manual palpation to evaluate pregnancies, it is not unheard of for a twin’s existence to go unnoticed until the birth.
Apart from the shock and logistics for the parents, this is medically
risky: for multiple births, it’s desirable to have extra supplies and attendants, as well as the ability to do an emergency C-section. And less critically, ultrasound can be a great way of making a pregnancy seem real, and start a sort of proto-bonding. I don’t know anybody who hasn’t teared up the first time they saw their baby on a scan, even if it’s still at the “peanut with a heartbeat” stage (6 or 7 weeks, if I recall correctly.)”
_____________________
Andrea again: Thanks for all the thoughtful comments. I like what Rebecca said about it being the mentality–not the tools. I have two friends who were offered testing in order that they might abort. (It was expressly stated.)
by
Elizabeth says
I am newly expecting and in my province they give you an information booklet on the Down’s/Spina Bifida testing and you have to decide whether you want it. The results are listed as “likely positive/likely negative”, so nothing is definite. I have talked it over with hubby and I don’t think I will bother. I wouldn’t terminate either way, however I was thinking the info might give me time to prepare or ease worry. However, a likely negative result would just unnecessarily worry be for six months and cause the doctors to talk to me about other “options”.
In terms of ultrasounds, I know that for me this is being used to determine my due date more accurately. I am not sure of all the medical reasons, but I am certainly excited about the emotional ones of seeing that picture. I would reconsider an ultrasound Andrea, as everyone I know that has had one describes it as a wonderfully exciting and moving experience. There is even a new private clinic here offering 4-D ultrasounds and the option to discover the child’s sex (our province won’t tell you). I also think that if more women considering an abortion (and raised in the belief that it is just a “clump of cells” in there or a parasite) saw an ultrasound they would change their minds.
Rebecca says
I think that I was very fortunate when I was pregnant; both times my OB offered me genetic testing and told me it was purely optional. The first pregnancy, I declined and it was never again mentioned; the second pregnancy I told her that I thought I might want to get the testing done because if the baby had a disorder that was incompatible with life (ie. if it would die soon after birth), I wanted to be prepared. She encouraged me NOT to get the testing because (1) it is not definitive anyway, and (2) any disorder that is incompatible with life can typically be seen on ultrasound, so I would be able to prepare for something like that should it occur. She also said that if I wasn’t prepared to be faced with a decision regarding amnio, and possibly terminating, I shouldn’t bother. So I ended up not getting the testing. I do think many women are pressured into it, and I am glad I wasn’t.
Ultrasound, though, can be very useful, especially in higher-risk pregnancies including multiples. Occasionally a problem can be seen with ultrasound that CAN be treated, either surgically or by having the baby(ies) born a little early. (There are some cases in which a baby is better off in a NICU than in the womb, unfortunately.)
DD says
One of my good friends is pregnant right now with a high risk pregnancy. I’m not clear on all the details, but there isn’t enough amniotic fluid and there may be some other complications. She’s been having ultrasounds every other week to monitor the health of the fetus and her doctors are using this information to decide how soon she she needs to go into the hospital before she’s due. (It’s looking like she might have to be on bed rest in the hospital for three months or so.) Initially, the ultrasound let them know that she had these complications and that she needed to be on bed rest at home immediately to avoid a miscarriage.
At the extreme end of the spectrum, we’ve all heard of surgery being performed on children in the womb. Because I’m feeling lazy, here’s some info from Wikipedia:
http://en.wikipedia.org/wiki/Fetal_surgery
I’m not a medical doctor, but I would guess some, if not all, of the conditions mentioned in this article are detected by ultrasound. And they are treatable.
Finally, I can think of at least one practical reason for having an ultrasound. I personally would never want to know the baby’s gender (I like surprises), but it was sure useful for my parents to know in advance that they were going to need two of everything! (I’m a twin.)
Oh, and Elizabeth is absolutely right. I volunteer at a pregnancy resource center, and having an ultrasound in the facility is a blessing. It helps bring women in and it gives them proof of the humanity of their child.
Patrick says
Some friends of ours had a child who was diagnosed in utero (by ultrasound) with gastroschisis – basically, his intestines were hanging out of his umbilical cord opening. The early diagnosis allowed them to schedule a C-section at an appropriate time (vaginal birth would not have been good for him) and to have the team of surgeons on hand to do the necessary surgery immediately after his birth.
He’s now a healthy 3-year old, but would likely have died had they not known of his condition before he was born.
Elizabeth says
Rebecca, thanks for your additional comments. You have given me a lot to think about – I have until Thursday to decide about the testing. (it is the blood tests btw – already decided against amnio)
Tara says
The problem with prenatal testing is that many, many women who think they would never terminate, change their minds when hit with the wall of fear that accompanies a Down syndrome diagnosis. Couple that fear with the pressure and assumption for termination from the medical community, and abortion begins to seem like the only sane choice.
I did not have a prenatal diagnosis, but had markers on the u/s and was given a 1:20 chance of having a baby with Down syndrome. We refused the amnio, preferring to take what we were given. Yet, at his birth, when our midwife announced that he probably did have Ds, before I even had a chance to hold him, the overwhelming fear and desire to find a way out was almost blinding. It was like the air was sucked from the room. My brain frantically, manically searched for a way of escape.
And then I held him. He looked up at me with those amazing blue eyes and I knew. We were going to be fine. And we are. We are lightyears beyond fine! We are blissfully smitten with a beautiful boy who continues to bring something extra to the table.
I am so grateful that I refused the amnio and my fear only lasted seconds, instead of months.
Cynthia M. says
Elizabeth – I worked in a prenatal diagnosis lab years ago when the blood tests were first being studied and clinical trials were underway to see if they should be routinely offered. Part of the purpose of the blood tests is to “pre-screen” women *early*, that is, to find out if there is a statistically better than average chance the baby has a genetic anomaly. These women are then offered further prenatal testing and high resolution ultrasounds to see if the blood test was accurate or a false positive. Part of the reason to do the testing early is so that if they decide to terminate, the decision can be made before they have progressed farther. The idea being that they can terminate the pregnancy with less trauma to their psyche. And part of the reason to offer the blood test to every woman (not just those over 35 years old), is so that even women who do not have age-related reasons to suspect an anomaly, can find out if there is a problem and have the option to terminate. In reality, the blood test is a tool to indicate genetic problems specifically so women can have the information to decide on termination.
So – if you have no intention of terminating a pregnancy, do not bother getting the blood test. Any of the anomalies it would indicate can be detected later when you get your ultrasound anyhow. Also, the false negatives for the blood test are particularly worrying. When you are given a “positive” result, the waiting interval before you can have the issue followed up with an ultrasound to determine if the blood test was a false positive or a true one can be interminable and highly distressing. If you are not going to terminate regardless, why put yourself through that? Just wait for the ultrasound — far more reliable. And it still gives you plenty of time to deal with any problems emotionally, or to have the medical community proactive in anticipation of baby’s arrival.
Tara – I am so happy at the joy you have found in your little boy. I suspect you are correct – many others who “think” it is not something they could handle or adjust to, might find unexpected and incredible strength in themselves if they allowed themselves to be positive and believed they could do it. For many, prenatal tests (acted upon) take away the challenge that they would be completely capable of dealing with, and growing through. They remove the challenge, and never realize they were up to the challenge, nor that they could be blessed so richly by it.
Elizabeth says
Cynthia: thank you so much!
Tye says
I’m surprised at some of the comments, just to think children with Down Syndrome need love too. My daughter is 6 years old and has Down’s. Every day I fight with school systems and Hospitals. Just like Americans trying to get rid of what they cant control. my daughter will live a normal blissful life, ( she is a happy little girl). Can you believe that she is main stream( in school) she is a cheerleader and being the oldest grandchild she has chores and helps feeds her younger cousins. I told myself when they told me she had Down’s to treat her like a normal child and thats what I do. For all the women and familes that what to get rid of your child with down’s look up cincinnati childrens hosptial, thomas center and there on the front page of the catalog is MY DAUGHTER!… I will answetr any question for those new parnets with a child with down syndrome.. wishing you all the best Tye:)
Gigi says
My sister found out recently that she is pregnant only 2 months after getting married. She just had the test done and doesn’t want to spread the good news for fear that if it’s a Down Syndrome Baby then she can abort and no one will be the wiser except herself & her husband, my parents, myself and my husband. I cried when I got home because I never thought that abortion would be the answer to anything. I opted out of the testing with my now 8-month old girl because we decided to accept what card God dealt us. Plus, my Mum influences my sister and her husband into thinking that life will be grim/depressing etc … when I told my Mum I didn’t do the test, she made me feel like I was foolish to openly want to be burdened with a Down Syndrome baby.
No one addresses what happens to a woman post-abortion. The chance for future pregnancies becoming ectopic increase and the psychological+emotional ramifications are too much for a woman to bear for a ‘quick’ fix. I actually lost respect for my sister and my Mum after that .. esp since my Mum raised up Catholics – albeit secular.