Refusing prenatal ultrasound

prmenrs, RN · Jun 16, 2006

So sorry for your friend Fergus. However, I stand by my statement that pregnancy is healthy. The caveat to this is that the pt must realize that unseen birth defects might not be detected. Few birth defects however can be corrected in utero though so I fail to see how early detection would have helped? Can someone enlighten me - as I stated, I'm certainly not the expert in this area?

W/some defects, (diaphragmatic hernia, oomphalocele, esophageal atresia, gastroschisis) if you know it's coming, you can assemble the necessary specialists @ delivery to deal appropriately w/a life-threatening situation. For hydrocephalus and ?some renal/urinary tract defects, prenatal surgery might be an option and in some cases would significantly improve the outcome.

In some cases, couples might wish to terminate the pregnancy. For others, that wouldn't be an option, but @ least they have time to adjust to a Down's baby (or whatever), do some advance research and just be better prepared.

The advantage of an Ultrasound is that it IS relatively non-invasive (the granola crowd would disagree, probably), and it really does help to know what you'll be dealing with.

jmho

fergus51 · Jun 16, 2006

Some people dislike excess interventions, regardless.
Perhaps, what should be assessed is how the information will be used and whether it will make a difference in the family's actions.
In my family's case, the vast majority would not undergo abortion, even if there was a serious defect/certain death of the infant involved. As such, having the test would just prolong stress of the family, and the results would change very little what we do.
I have declined to be tested for heredity colon/breast ca. As I would not consider having a prophylactic mastectomy/oopherectomy or colectomy, based on the results, and I already undergo the preferred surveillance, and I have no blood sisters or children, there is little value to the test other than to make me fret.
PKU is really not an adequate comparison, because it is easily treatable, while many of the defects seen by US are not. PKU testing is also mandated by law in many places.

This isn't about abortion to me. I guarantee you any mother would do things differently if she knew her baby had gastroschesis (like not attempt a lady partsl birth) or a cardiac defect (like making sure they deliver at a hospital that can treat their baby). Many, many defects can be treated at birth even if not in utero. I looked after a baby a few weeks ago who was an undiagnosed diaphragmatic hernia. He almost died in postpartum. The outcome would have been better had that baby gone straight to the NICU.

I do respect a woman's right to decide for herself whether or not to have u/s done.

palesarah · Jun 17, 2006

There are a lot of people who are just against interventions in pregnancy, period. I got a very skewed view of the obstetric world in my doula/midwifery training (prior to nursing school, I considered becoming a homebirth midwife).

The specific reasons I've heard people give for not wanting ultrasounds- not approved/considered "safe & effective" by FDA with a reference to some study involving ultrasound and chicks or eggs or something (several years ago); a thought that ultrasound could contribute to an increase in deafness in newborns (routine ultrasounds and routine newborn hearing screens seemed to have come along around the same time I guess?) because ultrasound bombards the fetus's fragile ear bones with high-frequency sound waves; and (most often) just a general concern that ultrasound is still a new technology and we really don't know what the long-term effects will be. I also heard a midwife speculate that perhaps ultrasound was somehow causing ADD/ADHD.

And there are some truths- the FDA, last I checked, recommend that ultrasound be used judicously in pregnancy. They do not recommend unnecessary exposure, esp by the use of commercial 3D/4D ultrasound companies or video momentos; it's a diagnostic procedure. And there aren't yet any real written, accepted standards for prenatal ultrasound. I know places where 3 is standard- 6-7 weeks for dating, 20 week survey, and third trimester to monitor growth. In my area, the 20-week survey is standard and if there's any question of dating, they'll do an early ultrasound for that. And more recently at 12-14 weeks, the nuchal translucency is being offered (Down sydrome marker)... And of course if there's a questionably located placenta, abnormal bleeding, family history of cardiac stuff or congenital anomalies, or any question of any anomaly, etc, those are generally accepted (medically) reasons for ordering an US.

but there will always be people who refuse intervention for the sake of refusing.

(I got really off track, I apologize. I'm sleepy and rambling... )

lovemyjob · Jun 17, 2006

When people say that an US wouldnt change anything about what they did, does that include placenta previa, in which baby and mother would die in a short period of time? What about a baby who was severely oligo at 36 weeks and possibly die before labor started naturally?

I see three as being more than adequate....maybe two, becaus eif you know your LMP you could base it off of that and then check size for more accurate dates at 20 weeks when they look for the other defects that would help assure the delivery team was prepared.

I guess I just dont see how you can justify not doing an US because of possible unproven problems with hearing when it has so many benefits... many that can determine survival or death foir mother and/or baby.

HeartsOpenWide, RN · Jun 17, 2006

I am not a NICU nurse but just in the ER, folks are generally getting away from invasive procedures and interventions during a normal pregnancy. I'm probably going to open up a can of worms here but I personally don't see the need for pre-natal ultrasounds unless there is a suspicion of problems. Pregnancy is a normal state, not a sick state.

I totally agree. They did not have ultrasounds when I was in the womb and I turned out fine. Many people think sonograms and ultrasounds are dangerous. I look at it the same way I think of getting an amniocenteses, if you are going to keep the baby whether or not it is going to be mentally retarded, why bother with the risk? Like you said, pregnancy is a normal state, not a sickness. I am not going to op for an epidural after I spent nine to ten months avoiding aspirin when I had a head ache.

lovemyjob · Jun 17, 2006

I totally agree. They did not have ultrasounds when I was in the womb and I turned out fine. Many people think sonograms and ultrasounds are dangerous. I look at it the same way I think of getting an amniocenteses, if you are going to keep the baby whether or not it is going to be mentally retarded, why bother with the risk? Like you said, pregnancy is a normal state, not a sickness. I am not going to op for an epidural after I spent nine to ten months avoiding aspirin when I had a head ache.

I can totally understand not getting an amnio. In my experience, they are usually false positives. Also, an amnio poses many more risks than an US. But what I am wondering is whether you found out by US that you were a placenta previa or any other potentially fatal problem, would you still opt for a lady partsl birth?

BTW, I LOVE your signature, very cute!

HeartsOpenWide, RN · Jun 17, 2006

I can totally understand not getting an amnio. In my experience, they are usually false positives. Also, an amnio poses many more risks than an US. But what I am wondering is whether you found out by US that you were a placenta previa or any other potentially fatal problem, would you still opt for a lady partsl birth?
BTW, I LOVE your signature, very cute!

Being a dead mother after a wonderful natural birth would not help my baby. I am totally for natural birth, I cheer for the midwives and think that they should be primary care givers of all uncomplicated pregnancy, but I am also understanding that things do not always go as planned in birth and am very appreciative that OB are there when needed...

andre · Jun 17, 2006

The only prenatal u/s I received was done because I was spotting. Otherwise, I wouldn't have been offered--nor would I have requested--a prenatal u/s. I considered myself low risk...and would have accepted any outcome that came our way.

BTW, I also refused AFP testing and the glucose tolerance test. I considered them unnecessary in my personal circumstances. Had I been of 'advanced maternal age" I'd have refused amnio, too.

At the same time, I consider these personal choices, and wouldn't think twice about someone who chose to have every conceivable test.

Andrea

lovemyjob · Jun 18, 2006

Being a dead mother after a wonderful natural birth would not help my baby. I am totally for natural birth, I cheer for the midwives and think that they should be primary care givers of all uncomplicated pregnancy, but I am also understanding that things do not always go as planned in birth and am very appreciative that OB are there when needed...

I am not trying to say anything about midwives v. OB because I think whether the mom chooses to have a prenatal US or not has nothing to do with midwives or OBs...I guess what I am saying is that I notice a lot of people say that they dont have one done because it wouldnt change the outcome, but in fact it would, because no one in their right mind would attempt something like a placenta previa lady partslly if it is known. With that being said, if an US could show a potential life threatening problem that could more easily be handled as long as it is known, I dont see how refusing an US is in any way beneficial.

I do think that it is in part a misunderstanding of what an US can show and how it can help to develop a plan and to avoid those fatal and tragic occurances where a simple US could have determined between life and death or a poor outcome.

I do agree that a lot of what the medical community does is unnecessary and they are trying to cover themselves to avoid a lawsuit, and as wise consumers of our healthcare it is up to us to be well informed to make decisions for ourselves and our loved ones. A simple US at...lets say 20 weeks EDC based on LMP to determine more accurate dating, placental evaluation, and observe for hydro, diaphragmatic hernia, cardiac anomolies, myelo (sp), ect, would be very valuable to the healthcare provider (be it NMW or OB) to determine if a home delivery is safe, or any other plan the mom has for her delivery. Like others have said, if a diaphragmatic hernia is present, having a team that is aware of it prior to delivery and ready to treat it is very crucial and saves precious time.

I am really just trying to understand the reasoning in refusing the US.

Cardiac Kid Mom · Aug 28, 2008

I realize this is an old thread, but I WISH prenatal u/s had been around when I had my kids!! As you might guess by my username, I have a cardiac kid. He has Interrupted Aortic Arch Type B, VSD, bicuspid aortic valve, among other post-op complications. Had I known of his congenital cardiac defect (no one in the family had ever had anything like this that we know of other than his half-sister with a simple ASD and the pregnancy was normal other than my gut feeling of "something" not right) I would have made certain he was born someplace where he would have had immediate NICU or CICU care and a good pediatric cardiac surgeon.

As it was, he was born 60 miles from Boston in a small town hospital. He refused to eat, jaundiced, and continued to deteriorate as his ductus closed. The head nurse kept telling me he was just a "lazy baby". I knew better. He tried SO hard to eat then would fall asleep exhausted and his chest behaved oddly when he breathed (I now know he was drawing). We got very lucky. We had a wonderful pediatrician who recognized early on that something was wrong and shipped him to Boston Children's. Our second bit of luck was Dr. William Norwood. My son was his first success in grafting an interrupted aorta. My son is now 30 and has 4 children. 2 have inherited elements of his 22q11 deletion, one with a full cleft palate and another with a high palate and speech problems, but no cardiac defects. ALL of the grandchildren had u/s so we were prepared for the cleft palate (her wonderful:eek: doctor told her the baby would look like a "monster" - such a lovely thing to tell a prospective mother:no: - fortunately she had a friend with 2 cleft kids and knew what to expect). His repairs have gone extremely well. We are now hoping to get into a family gene testing program to determine if any of the other children carry the deletion, including my other son's and daughter's kids.

In retrospect, prenatal u/s would have saved us a lot of grief and while we got very, very lucky, it would have greatly increased my son's chance of survival had we known in advance, though in 1978 his chances were essentially 0 anyway had he been anywhere but Boston. Today, an u/s of his defect would provide a 90% survival rate if the newborn gets to a good cardiac center before the ductus closes. I'd take those odds any day! While most pregnancies are without serious complications, a relatively simple, non-invasive u/s can truly be a lifesaver and I can't understand anyone refusing one. Less than a month ago a friend lost her baby girl and nearly died herself to placenta previa because no u/s was done near term, though it might not have helped in this case. This was in Russia, though, and u/s is not routinely done so we will never know. I guess with my experiences, I simply cannot comprehend not doing a test that appears to have no lasting effects and that can save lives. As a teacher, I'm more inclined toward rapidfire input overload in early infancy as a cause of ADD/ADHD as a result of TV, constant car travel, changing environments, etc.

I just wanted to put my 2 cents worth in here in favour of prenatal u/s. Had one of my grandchildren inherited my son's defects it would have been treated very differently and much more quickly because we would have known in advance. BTW, my son was 7lb. 5 oz. and had an Apgar of 10 so by the time he got sick enough to transfer he was already very critical. I'm sure he would have recovered more quickly had the surgery been done before he was so near death.

littleneoRN · Aug 28, 2008

I have a friend who refused simply because she didn't feel it was necessary. But when you ask NICU nurses about this or home deliveries or other "alternatives," remember you're always asking a biased crowded. We've seen the worst. The severe coarct who went undiagnosed until she was 10 days old and came in with a pH of 6.8 in renal failure. Or the term babies born at 600 grams because no one detected the lagging growth that could be detected by US. I am one of the people who would never consider abortion if I found out that my child had a serious or lethal problem. On the flip side of the coin, I'd for sure have my ultrasounds because if my kid has a cardiac defect, I want the NICU team there when I deliver, not racing to get there when my kid crumps in the newborn nursery. (Not that I plan on him or her spending much time in the newborn nursery). On the other hand, with a risky procedure like an amnio, I'd probably skip it. But we as NICU nurses know the worst possibilities, and I at least want to take the seemingly safe measures that I can to be prepared and offer my child the best possible care if he needs it. Pregnancy is NORMALLY a healthy state, but not all moms are healthy and not all babies are healthy. And things don't just go wrong for the "at risk" moms--e.g. advanced age, diabetic, etc.

rn/writer, RN · Aug 28, 2008

One of my daughters found out at her 20-week ultrasound that her son would have spina bifida. Abortion was never a consideration. But having that knowledge ahead of time allowed her to work through the emotional shock, learn as much as she could about his prognosis and resources, and even to be contacted by the spina bifida clinic at our local children's hospital. This was a much better choice than going through the crash course on delivery.

Speaking of the delivery, Joseph was delivered via c-section almost two months early because a later ultrasound showed that his kidneys were in danger of shutting down. He had very little amniotic fluid, and he was close to death.

Because we knew about the spina bifida, my daughter had the baby at top-level hospital on the same campus as the children's hospital with the level III NICU her baby needed. And she had a section which reduces stress and further damage to the open spinal lesion. Without that initial u/s, she would have delivered at a good but lesser equipped hospital. Joseph might have died of kidney failure/oligohydramnios at 32 weeks. Best case, he would have required transport to another hospital ASAP under emergent conditions instead of an incubator trip through a tunnel to the NICU that helped to save his life.

I can't tell you how much those months of prep time helped us as a family to get ready to received this fragile child. The spina bifida clinic and support groups were already in place to help my daughter adjust. It made a world of difference.

Joseph will be twelve in September. Now his mom is one of those who makes contact with parents and helps them learn and prepare for the challenges ahead. Often, this is prior to the birth as it was with her. With this kind of assistance, parents have hope by the time their child is born instead of having to deal with unhappy news while in a postpartum blur of hormones and fatigue.

Non-invasive ultrasound is a magnificent tool for detecting problems that can be corrected or altered in utero--the number of procedures that can be performed prior to birth is growing.

It's an excellent indicator of delivery needs--section vs. vag, level III hospital, specialists and necessary equipment waiting.

But even in those cases where nothing will change--no treatment available, no different outcome possible--parents have the luxury of time to come to terms with their child's condition, to gather information, and enlist support.

Amnio carries the risk of pre-term labor and the loss of the child. Parents have to evaluate the risk of doing the the procedure vs. the benefits to be gained. But ultrasound is non-invasive and has the potential to be life saving.

Had my daughter refused her ultrasounds, she would likely have lost her son.