Refusing prenatal ultrasound

tencat · Aug 29, 2008

Pregnancy is a normal state, not a sick state.

Unfortunately, for some of us pregnancy IS a 'sick state'. Some of us don't do pregnancy well, and it is NOT a joyous and wonderous event. I'm just saying this because I HATE it when everyone assumes pregnancy is this wonderful, normal thing for everyone. That is not always the case.

As for refusal to do an ultrasound, if everything appears to be going the way it should, then I think it's up to the individual as to whether or not she wants one. I think they are extremely useful tools, not to mention it's kind of fun to see the little critter in the womb

Cardiac Kid Mom · Aug 29, 2008

How very true, tencat. My daughter is one who does not do either pregnancy nor delivery well at all. She was miserable from almost day 1 of each pregnancy and had serious difficulties with her first 2 deliveries. First delivery broke Mom's tailbone. Her 2nd child was born with a broken collarbone which caused brachial plexus damage rendering her right arm nearly useless. The 3rd delivery was by section. That baby had an hemangioma on her nose/below her left eye, but at least nothing was broken. My daughter-in-law developed gestational diabetes and was quite sick in her last trimester. Assuming that pregnancy is a normal, healthy state describes most cases, but there are definitely women who do not do pregnancy well at all even when everything is fine with the baby. Oddly, my 3rd one was the only one I was sick with, and I was dreadfully ill for the first 3-4 months. Perhaps that is what gave me that feeling of something not quite right with the pregnancy. It was very different from my first two.

On a side topic, I've been amazed how ignorant people are about hemangiomas! We have even had nurses ask my granddaughter what she did to her face! It is SO obvious that this is neither a bruise nor any kind of injury! The other part of it is people asking the child! Nothing like making a little girl feel even more self-conscious about a birth defect than she is anyway. Fortunately, she is a strong personality who handles it well. Especially since she just started school. I'm sure her mother being a dermatology nurse for the past 15 years has helped, too. But it truly is incredible how insensitive people can be, even those trained to be sensitive to deformities.

HappyPediRN · Aug 30, 2008

Cardiac, thanks for your response. I really feel that each circumstance is unique and that it's so hard to decipher the "what ifs" and "maybes" when it comes to losing a child or potentially losing a child. I don't have other children, I really don't think I want more but if I did I wouldn't tell any future children about what happened. It would open up so many doors that I don't want to step through, and I just don't see how it could benefit them to know. I may feel differently someday but I highly doubt it. I believe that we are incredibly lucky to have amazing prenatal care available to us in this country, and that we are so advanced in diagnostics and procedures that formerly 100% fatal conditions such as HLHS now has a good survival rate with a heart transplant or a complex three part surgery. That said, I do believe that our diagnostic capabilities is a double-edged sword. It makes us second guess ourselves and our parental instincts. It can also complicate decisions that we wouldn't normally think twice about...and it can make having to say goodbye a lot harder.

Cardiac Kid Mom · Aug 30, 2008

October, each person/family has to make its own decision about such things. Because I had an elder brother who remembered (he was 4) my mother chose to integrate the loss into the family structure and dynamics. We put flowers on Michelle's grave every Memorial Day along with the grandparents, g-grandparents, g-g-grandparents, etc. throughout my childhood. I think there were at least 4 or 5 generations in that cemetary! Unusual in CA! I'm sure my mother went at times other than Memorial Day, but that's the only time she took us. Choosing and arranging Michelle's flowers was always very special to me. Baby's breath and pink carnations were always the foundation of my choice, even as a pre-schooler. Mom was a very philosophical, pragmatic sort, though, and didn't dwell on the loss. She dealt with it and shared her feelings and caring with us. In a way it made me and my younger sister feel more wanted since she risked that again with each pregnancy. Michelle was hydrocephalic and had spina bifida. Mom had suffered 4 huge losses in less than 10 years - her 1st husband in WW II, a miscarriage with him, her father, and then Michelle. Her strength and courage always amazed me. She was quite an extraordinary woman. If I am half the woman she was, I'm happy. And she was incredible source of strength and wisdom for me when I was going through the first 3 surgeries (6 days, 10 days, and 5 weeks) and 3 months of CICU with my son. I had 2 children at home 60 miles away, no family nearby to stay with them, so often had to make the choice of which to be with. It was hard. The slow progress and very iffy prognosis were probably the most difficult, though.

At the time my son was born the 3 possibilities they had narrowed to at the first stage of diagnostics were branched aorta, HLHS, and interrupted aorta. The latter was the only one for which they would even attempt a repair and fortunately, that is what he had. His surgeon was Dr. William Norwood. He pioneered the surgery and Daryn was his first success. He has been the oldest person on the planet with his diagnosis since he was just a few months old. They had done the same surgery the day before on a child about a day older than Daryn but lost him to Ca deficiency and pneumonia at 9 mo. Daryn was perfectly healthy other than his malformed plumbing. Many of you may be familiar with the Norwood Procedure (first stage for HLHS). Yep. Same doc. He is (was, he's retired now) extremely dedicated and an extraordinary surgeon. I wish I knew how to contact him. I would love to tell him how Daryn is doing!

I hope your loss isn't preventing you from having another child, October. That would be sad. I suspect you would be an awesome mom and what happened would be unlikely to happen again unless it was some kind of dominant genetic problem. I hope not. Whatever you choose, I wish you well and a happy life. You have taken your loss and turned it into strength and caring. That is a wonderful tribute to your child.:redbeathe

Zozo · Aug 31, 2008

Let me preface this by saying I am not a nurse, but am considering it.

When I was pregnant (had baby 01/08) I spent days and days and days sifting through information on the internet. There were some scary speculations that the sound waves that enter your tissues during an ultrasound do actually have some effect on you and the baby. They are not "nothing." The effects may be very small, but who knows, maybe they can effect the brainwaves of sensitive fetuses. I don't remember exactly what they supposedly do, or where the info came from. But even my doctor during my pregnancy supported the idea of less invasive prenatal care (including only one ultrasound at 20 wks. For high risk pregnancies the care is different of course.) I do live in a city with a high population of "naturalists."

I did get the us because I wanted to see for myself that there was actually a little person in there!:redpinkhe

But there is a lot out there (especially on the internet) that scares pregnant women away from the "medicalized" pregnancy and birth. Horror stories about vitamin K, eye ointment, vaccinations, pitocin, epidurals, c-sections and infections abound. I was more terrified of the hospital than I was to have the baby. Some people, maybe they are the minority, have suffered horrible consequences from the very care that is supposed to be helping them.

However, I am so glad I read this thread because it showed me the other side of the coin. There are many GOOD reasons to go ahead and get the ultrasound!

rn/writer, RN · Aug 31, 2008

As in most important matters, balance counts for a lot.

Pregnancy, in general, is a condition of health, not of illness. But sometimes there are sick babies whose development and delivery might be greatly influenced by a judicious intervention.

Just as true, there are those for whom unnecessary interventions can have a negative outcome.

The problem is that we don't always know with certainty which actions will produce which results.

I hate to hear stories about convenience/cosmetic c-sections and all kinds of "because we said so" procedures that may not have evidence to back them up.

I am just as incensed to hear of parents who dismiss every intervention out-of-hand because they are convinced that medicine is evil and anything natural is good. It used to be "natural" to lose a lot of mothers and babies in childbirth. The fact that such deaths are exceedingly rare (especially when factoring out babies whose conditions are incompatible with life) says we must be doing something right, even if it isn't always handled as delicately as it could be.

That isn't to say that infant mortality doesn't need to be reduced. Only that rational people make decisions based on all the information available to them at the time. They don't come in with their minds made up pro or con and slam the door on anything that might cause them to think differently.

Balance is such a life-affirming concept. The human body makes constant adjustments in order to achieve and maintain it. Life is good when the human spirit does the same.

Cardiac Kid Mom · Aug 31, 2008

Doodle B, you make some good points, however, in most cases people just don't understand WHY certain things are given to their babies. Women can have infections they don't even know they have and gonorrhea and other infections used to be quite prevalent in birthing mothers, especially before good testing for such things. The eye drops or ointment prevented blindness from infection in the newborn. Perhaps testing the mom and using the preventative in the baby might be a better way to go than to just routinely treat the baby, but that takes time and money no one wants to expend. So what do you do? Seen in that light, perhaps routine preventative treatment in newborns makes more sense. As for vaccines, we have been so long with only minimal cases of the dread diseases they prevent, people have forgotten how horrible diptheria, polio, or smallpox are! Watching your child slowly drown in its own mucous from diptheria is hideous! Or suffering paralysis and severe lung and nerve/muscle damage from polio. The chance of dying or having permanent debilitating damage from the diseases is massively higher than the chance of complication from the vaccines. This has been proven. What makes more sense? Personally, I'll take my chances with the vaccines.

And yes, American hospitals seem to be the best place in the world to get an infection. Why becomes very clear if you have ever been treated in a hospital in Austria or Germany. Where staph infections are essentially the rule in US hospitals, they are very much the exception in Austrian and German hospitals. MUCH greater care is taken in the European hospitals to prevent infection and aftercare is very different. I have had surgery in Austria and in the US. BIG difference!! My daughter worked in a German hospital for 7 years and now works in the US. She confirms that the way things are done to prevent infection are routine and far more effective in Germany. Why? Money and the physicians'/caregivers' perceptions of the patient. Hospitals in the US are places to escape as soon as possible if you are to avoid a nosocomial infection. Not so in western Europe. I'm glad your pregnancy went well and you had a healthy baby. But as you noted, there are definitely two sides to everything and sometimes it's hard to get both sides. Much of what makes its way onto the internet is the horror stories because when things go right, people don't make a big deal out of it and put up web pages about it.

rn/writer, you are so right in the concept of balance and moderation. Experience has taught me that much of life is about just that. Many things, especially in medicine, are way overdone simply for the money which is one reason we pay so much for insurance! Medicine in the US has almost become more about money than patient care with the sole exception of nursing. Most nurses go into nursing because they genuinely care about people. Not so with many doctors. I've run into that time and again, especially in pain management. Natural is wonderful when things go well naturally. It's not so wonderful when nature takes a nasty twist. Maternal and infant mortality rates in Russia are similar to what they were in the US before hospital births. There is definitely something to be said for professional care and "unnatural" monitoring!

HappyPediRN · Sep 1, 2008

October, each person/family has to make its own decision about such things. Because I had an elder brother who remembered (he was 4) my mother chose to integrate the loss into the family structure and dynamics.
I hope your loss isn't preventing you from having another child, October. That would be sad. I suspect you would be an awesome mom and what happened would be unlikely to happen again unless it was some kind of dominant genetic problem. I hope not. Whatever you choose, I wish you well and a happy life. You have taken your loss and turned it into strength and caring. That is a wonderful tribute to your child.:redbeathe

CKM, I agree with you. In my case I don't think I would choose to integrate my loss into a future family because I don't want to reveal the fact that I got pregnant at 17 by someone who is not my husband. I think it would be difficult to integrate the concepts of loss and the fact that it is just mommy's baby. The teen pregnancy alone just opens up too many cans of worms as it is and I just don't think I want to go there. I don't talk about it with anyone in my real life, ever. I don't think I've even said his name out loud more than once or twice in the entire six years. The only positive thing that came of it was I discovered my passion to be a NICU nurse. Thank you for your sweet words but unfortunately after my experience I don't think I want more children. It's too risky to endure 9 months of pregnancy just to lose it all at the very end. I don't think I could go through that again. I don't want to. I love children though and will be THRILLED to be an auntie! :redbeathe

cardiacRN2006, ADN, RN · Sep 1, 2008

It's too risky to endure 9 months of pregnancy just to lose it all at the very end. I don't think I could go through that again. I don't want to.

Oh October...:redbeathe

I wish for nothing but the best for you...

EricJRN, MSN, RN · Sep 1, 2008

Fergus, I really think that unless you've experienced this first-hand you can't assume what some, most, or any women would prefer.

So many of us on this thread are thinking about our own experiences in relation to prenatal ultrasound, but in reality, those of us with first-hand experience of prenatal problems may have more difficulty with making assumptions because of our past experiences. I know I do.

I was born with spina bifida (the same condition that affects rn/writer's grandson - although my defect seems to have been lower on the spine and less complex). I was born by C-section for cephalopelvic disproportion. The spina bifida wasn't able to be diagnosed on ultrasound. In fact, my parents remember the first time they heard anything about spina bifida: It was after delivery, when my mom's OB wrote 'MYELOMENINGOCELE' in big letters on his scrub pants.

Because I had been sectioned and ended up with a better neurological outcome than some, I thought for many years that the C-section (and the ultrasound) really played a huge role in my outcome. However, studies related to SB outcomes are conflicting - C-section certainly doesn't produce uniformly better outcomes like I once thought it did. I could present myself as some kind of poster child for prenatal ultrasound based on personal experience, but in reality, I'd likely be just fine without it.

It used to really get me worked up to hear about women who refused the standard prenatal interventions. After a couple of years working in an urban NICU (where we're happy if mom saw a doctor even once during pregnancy), I feel like I have a little bit more balanced view.

rn/writer, RN · Sep 3, 2008

You are fortunate, Eric, that you had such a wonderful outcome. And your patients and their families are blessed to have you as a living example of what is possible for some SB kids.

studies related to SB outcomes are conflicting - C-section certainly doesn't produce uniformly better outcomes like I once thought it did.

This may be true when looking at all babies born with spina bifida. The stats change, however, when considering only those with large exposed lesions and severe hydrocephalus. Those kids benefit greatly from avoiding the stress and internal pressures a lady partsl birth would subject them to.

Besides this, SB is one of the birth defects that offers the greatest hope connected with fetal diagnosis and treatment. Babies in their second trimester have had their lesions successfully closed and have been able to avoid much of the damage associated with the deformed spine, the exposure of the spinal cord to toxins and infection in utero, and the hydrocephalus and brain malformations that develop in many of these kids.

Regardless of birth method, prenatal ultrasound remains an incredibly useful tool with little in the way of documented side effects. There are many children around today whose lives have been saved or improved by knowing in advance that they would need some kind of intervention before, during or after birth.

Most of those babies whose moms opt out of any kind of prenatal testing will do just fine. For some, though, an ultrasound during the pregnancy has the potential to make a tremendous--even lifesaving--difference.

Cardiac Kid Mom · Sep 5, 2008

OctoberBride, I can definitely understand in your situation why you would wish to put the entire experience in the past. It would cause more pain and negative family experience than positive. However, before you close the door entirely, you might seriously consider a genetic consult. The chances of a recurrence of your previous experience are very likely extremely low to non-existent. I just hate to see you close a door completely for a reason that may not exist other than in your fears. Believe me, I do understand. I had a tubal ligation after my cardiac kid for fear of having another with similar problems. Little did I know at the time that it is genetically linked but came from his father's side of the family! With another father, my chances of having a similarly afflicted child were essentially nil. We parted ways 2 years later and I many times wished I had not totally removed the possibility of another child with my current husband and love of my life. We would have loved child together but, due to my previous fears and lack of information, it was rendered impossible. We couldn't afford IVF, so that wasn't an option. I made a choice based on fear and ignorance that changed the rest of my life. A choice i wish now I had not made. Had I had adequate genetic counseling at the time, I very likely would have made a different choice. Please think about it. Being an auntie is awesome, but being a grandmother is so much mor ethan awesome it can't even be compared!! As I said before, whatever your choices, I wish you well and a happy, fulfilling life.