Refusing prenatal ultrasound

Specialties NICU

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Can someone please explain the rationale of this to me? I realize I'm very biased being a NICU nurse in a level III surgical/cardiac center but?????

Thanks

curly

Specializes in Caring for and raising a cardiac kid.

Even though I am not a NICU nurse, I have seen enough serious congenital problems during my son's various hospitalizations that I totally agree, littleneoRN! My foster daughter also had triplets so we had a bit of NICU time there, as well. She carried 33 weeks, 6 days and all 3 were over 3 lb so she did really good. They all went home within 3 weeks and caught up within a year or so. They are 5 now. Needless to say, u/s was most helpful in that pregnancy and c-section!

As with my pregnancy, even with a normal, uneventful pregnancy things can be very, very wrong. Even a cord wrapped around the neck or a limb can be seen on u/s and damage prevented. My son's defects couldn't be prevented, but he could have received appropriate intervention before organs started shutting down! I doubt I would submit to an amnio, either, as the invasiveness is rather risky for inconclusive results, but an u/s falls into the same category as vaccines, IMHO. It's relatively risk-free preventative medicine that at the very least can help ensure that baby has the best chance if something isn't right.

Personally, I'd rather run the very small risk of minor damage (totally unproven at this point) u/s might cause than deliver a very sick baby too far from specialized care to provide rapid intervention. It's not worth a child's life. I suspect if one were to look at the stats, neonate mortality rates have probably dropped since routine u/s has become the norm. It's silly to do it just to find out the gender, but it's not at all silly to make sure all organs are where they should be, growth is normal, the spine is properly closed (I have a niece with spina bifida), the skull is well-formed, the placenta is healthy and well-located for a safe delivery, and the cord is properly formed and not wrapped around anything it shouldn't be, among other things. Being prepared ahead of time for problems can mean the difference between life and death in many cases.

For my son, we were just plain lucky, were in the right place with the right doctors, and he had an incredible will to live. I guess it's easy for someone who hasn't had an extremely sick baby to say no because they haven't been there and don't fully understand the possible ramifications. I've anxiously awaited results of every u/s of every grandchild hoping and praying that the heart and spine are OK. For us, the cleft palate was minor and something we could easily deal with (even though it means he probably carries a genetic anomaly), but at least we knew about it ahead of time, were prepared to deal with it, and had the right doctors and care in place before he was born. It made things a lot easier! I would encourage every expectant mom to have at least one u/s simply for the health and welfare of her baby.

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Specializes in Caring for and raising a cardiac kid.

I'm sorry to hear about your grandson's spina bifida, Miranda. (I think we were posting at nearly the same time!) I hope Joseph is doing well without too many complications.

My brother and sister-in-law had to do the crash course with my niece. Jessica is 21 and u/s was not yet being done routinely when my sister-in-law was pregnant with her. Frankly, it was pure He!! for the first few weeks. Jess has a number of associated problems like renal difficulties and Arnold Chiari so it hasn't been an easy time for any of them. The advance notice of problems would have made things so much easier! Not that sb is easy to deal with in any way at any time.

Fortunately, she was born in a large, major hospital that had a good NICU so that made things a little easier. Jess has had numerous surgeries for clogged or infected shunt, kidney stones, and she has Harrington rods because her spine started to collapse but she has a good attitude and is making the best of her life, though she has now exceeded her projected life-expectancy (according to the docs when she was about 5). She is in college and works as a playground assistant at an elementary school. Overall, she is fairly independent and doing pretty well. An u/s wouldn't have done much for Jess, but it sure would have made things easier on her parents!

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I'm sorry to hear about your grandson's spina bifida, Miranda. (I think we were posting at nearly the same time!) I hope Joseph is doing well without too many complications.

My brother and sister-in-law had to do the crash course with my niece. Jessica is 21 and u/s was not yet being done routinely when my sister-in-law was pregnant with her. Frankly, it was pure He!! for the first few weeks. Jess has a number of associated problems like renal difficulties and Arnold Chiari so it hasn't been an easy time for any of them. The advance notice of problems would have made things so much easier! Not that sb is easy to deal with in any way at any time.

Fortunately, she was born in a large, major hospital that had a good NICU so that made things a little easier. Jess has had numerous surgeries for clogged or infected shunt, kidney stones, and she has Harrington rods because her spine started to collapse but she has a good attitude and is making the best of her life, though she has now exceeded her projected life-expectancy (according to the docs when she was about 5). She is in college and works as a playground assistant at an elementary school. Overall, she is fairly independent and doing pretty well. An u/s wouldn't have done much for Jess, but it sure would have made things easier on her parents!

Sounds like our experiences with sb have been similar. Joseph has a Chiari II malformation. He nearly died at six weeks of age because his brainstem was beginning to herniate. Had to be flown via chopper into the hospital and have an emergency decompression. He spent eight of his first twelve months in-patient with one problem or another.

Since then, he has had close to 40 surgeries--shunt revisions, many ortho procedures, rod insertion, wound washes, rod removal, you name it. He has had bouts of cellulitis, UTIs, and other kinds of problems that keep my daughter very vigilant.

At nearly twelve, he functions at about a seven- or eight-year-old level. Prematurity, repeated hospitalizations, intra-cranial pressure when shunts weren't working properly, the Chiari malformation, and all the physical stress have delayed his development, but socially, he's the sharpest knife in the drawer. He has many, many friends among the hospital staff who call in to see him when they know he's there.

Kids like your niece have blazed the trail for Joseph. I don't know if Jess was a section baby, but Joseph probably wouldn't have survived a lady partsl birth, such was the size of his lesion.

I'm sorry your brother and SIL had to endure the sudden shock of an abnormal birth. An ultrasound might not have changed a thing for Jess, but it would have given them a good start in their new way of life if they'd had a few months or even a few weeks to deal with the emotions.

I can't imagine having such a wonderful, non-invasive tool as prenatal ultrasound available and not using it.

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Specializes in pedi, pedi psych,dd, school ,home health.

I have to agree that us is a valuable diagnostic tool for those "hidden" defects..I have a nephew who is now an 18y.o cardiac kid... his issues are tntc for here; but suffice it to say had my sis in law had a us he would have been born in Boston instead of an ambulance ride in a snowstorm at 10 hrs old to Childrens. He too has had multiple surgeries and is functioning fairly well now; but it would have made his parents much more prepared had they known. My dgs had kidney issues so they did repeated us to make sure he was ok.. and I am so glad we knew and could prepare just in case they werent!

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Specializes in NICU, Telephone Triage.
Can someone please explain the rationale of this to me? I realize I'm very biased being a NICU nurse in a level III surgical/cardiac center but?????

Thanks

curly

That's nothing, really. We've been dealing with moms lately who are refusing c-sections (and baby has a bad outcome), refusing Vit. K shots (but will give it PO, but doesn't work as well!), refusing Erythro. eye ointment, refusing vaccines...you name it. These parents think they are doing good things for their babies by not having these things done, but usually will end up harming the baby.

Maybe they don't want the ultrasound because they won't abort no matter what...which is their choice, I've heard of parents refusing any kind of testing because they'll be fine with whatever happens.

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Specializes in GI.

From pp "......Down's baby (or whatever), do some advance research and just be better prepared."

As a NICU nurse, I would expect you to know that Down's babies are not babies of Dr. Down. They are babies with Down syndrome. This for any NICU nurse that ever talks to a parent about their baby that has Down syndrome. Never refer to children, adults, or babies as Down's it's insulting and dehumanizing. I'm sorry for the rant and usually I dislike PC crap, but as a parent w/ a baby w/ Down syndrome it grates me and others like me. Didn't mean to hijack the thread.

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Specializes in Caring for and raising a cardiac kid.

No big deal, Scrubmouse. I understand completely and I'm sure others do, too. Most people don't know much about Down Syndrome and simply repeat what they have heard through the media. (At least no one refers to Down Syndrome as Mongolism anymore!) Though I am currently in Moscow, Russia with the US embassy, I am from Alaska. Our governor had a baby with Down Syndrome this past spring. She has kept his condition very private (as it should be), but did let people know that he is a special needs child and why. I hope your child is doing well. My experience with Down Syndrome is that afflicted children are some of the most loveable, happiest, incredible children around! Since cardiac defects seem to be part of the syndrome, I have had the pleasure of meeting a number of these amazing children.

DDRN4me, it sounds like you had an experience similar to mine except we were only 3 hours from Boston and he was born in late May so no snow. Do you recall the Blizzard of 78? I was 7 mo. pregnant for that! Thank heavens he wasn't due in the winter! He was born in Gardner. They sent him to Worcester first at about 10pm then on to Boston. Worcester prepped him for the cath and had narrowed it down to 3 possibilites (only 1 of which was remotely operable which luckily it turned out to be) so he was all ready to go when he rolled into BCH but they baptized him enroute because they really didn't expect him to make it. That was by far the longest night of my life!! We got to BCH at about 7am. He totally beat all the odds. My son has basically been able to live a normal life, though he is beginning to have some things turn up like HBP at an unusually young age. He's had 6 surgeries, the last when he was 27. He played soccer, basketball, and was able to do most of the things his friends did most of the time. He now drives a cement mixer. He's definitely my miracle baby.

Miranda, I have no clue how many surgeries Jessica has had. I know it's a LOT. Lately she's had several for kidney stones. Part of taking over her own care is she is a typical young person and won't follow doctors' orders to the letter, like drinking enough water. Overall, though, she has had a rather quiet few years lately insofar as surgeries go. She has some learning difficulties but is relatively normal, if a little slow, in her mental development. She, too, has been a bit of a social butterfly. She has loads of friends. She was an emergency c-section. It would have been better for everyone if the c-section and shunt placement could have been planned in advance. She, too, has a fairly large lesion at about T7-T10.

Kimbalou, I have to say I am appalled by parents' refusal to get vaccines, c-sections (most reputable doctors don't go there unless someone's life is at risk!), vitamin K shots, eye ointment, etc. None of it makes ANY sense to me at all!! I rather suspect that the parents who do this are functioning in ignorance with partial information or misinformation. It's sad for the children who are affected. I watched my cousin go through polio and was adamant about vaccines with my kids! I guess experience is a good (if tough) teacher. I made sure my kids had every advantage to avoid unnecessary complications and taught them to do the same with their kids. I'm astounded in this age of information that people can be so ignorant that they would risk their children's well-being like this! It saddens me that children are being made to suffer for their parents' ignorance.

I've never thought of u/s as being connected with abortion in any way. I see it solely as a terrific diagnostic tool that can detect life-threatening anolmalies and help provide the safest delivery and neonatal care possible. Regardless of whether or not fetal development is normal, it just seems prudent to make sure everything is in place for a safe delivery and live baby. I know I wouldn't abort a cardiac kid, but I honestly couldn't say what I would do if I knew I was carrying an anacephalic fetus with no chance of survival or any kind of meaningful life. To me, that is an entirely personal choice and decision to be made between the expectant mom and her doctor. The only way I could tie that in with u/s is knowing early enough to have a choice. Stillbirths are not fun for anyone. All I know is my son's condition and early care would have been vastly improved had we known in advance what was going on with him. By the time he made it to Boston at 6 days of age he was so sick that his chances of survival were extremely slim and his chances of stroke, kidney failure/damage, etc. were extremely high. An u/s would have prevented the extreme emergency and greatly reduced his chances of dangerous complications like stroke. He was a very lucky boy as his entire blood supply was pretty much limited to proximal to the interruption by the time they were able to reopen his ductus with medication just prior to surgery. He was in congestive failure and the blood pressure in his carotid ateries was through the roof! His liver and kidneys were getting just a tiny trickle of blood supply. Luckily, his ductus decided to remain a teensy bit patent or he wouldn't have had a chance at all. An u/s during the pregnancy would have been tremendously helpful as he wouldn't have had to suffer for 6 days before having his defects repaired.

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Specializes in Pediatric Psychiatry, Home Health VNA.

The reason it would have helped her to know earlier Trauma, is that she would have been able to deal with it earlier. A D&C at 8 weeks is preferable to some women than having to be induced and deliver a dead baby lady partslly at 7+ months. She would never have had to explain any of it to her kindergarten class if that were the case. She wouldn't have been at the point where she was producing milk yet.

Fergus, I really think that unless you've experienced this first-hand you can't assume what some, most, or any women would prefer. I had several prenatal ultrasounds with no indication that anything life-threatening was wrong and delivered my son stillborn at 39.5 weeks. I wouldn't trade that time I was pregnant with him for anything, and if I knew in the beginning that I would lose him at the very end I can't say that I would have electively terminated my pregnancy. There is no easy choice, and not having to tell a kindergarten class and lactating are not justifications for an early termination. Without getting into an abortion debate (I'm pro-choice just to let you know what I say does not stem from that discussion), I really don't know that early termination is preferable to a stillbirth. Some women hold out hope that their baby could be the one in a million miracle and be okay and some women prefer nature to take its course. I know I am grateful for every single kick I got to experience, for every laugh we got out of the pregnancy, for all the hopes and dreams he gave me. If nothing else I got nine wonderful, beautiful months with him. He helped me grow, mature, and find my strength. He will always be my hero. I wouldn't change those moments for all the early detection and prenatal ultrasounds in the world. So you see, it's not as black and white as it appears.

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Specializes in Cardiac.

I'm sorry about your loss October....how long ago was that?

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Specializes in Pediatric Psychiatry, Home Health VNA.

Just passed the six year mark in July. It's still hard sometimes but nowhere near the same kind of pain. It's much easier to write about it than actually talk about it.

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Specializes in Cardiac.

I bet it's still hard. I had a positive on an hpt that went away and I went ballistic. I can't even remotely imagine what you went through. So very sad.

Glad you came along and told your story...:redpinkhe

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Specializes in Caring for and raising a cardiac kid.

My deepest condolences and sympathies, OctoberBride. I'm so sorry you lost your baby boy. My mother lost a full term baby in 1950 and I don't think she ever "got over it" (she died in 87). That is an experience that stays with you forever, though the intense pain does lessen over the years. I was younger but grew up knowing I had a sister who had died before I was born. Her presence/existence was felt in our family and affected the family dynamics even though she was stillborn and I never knew her. Do you have other children?

Like I said, I couldn't say what my choice would be if I knew there were a serious anomaly. I've not been there, it's certainly not a choice I would want to make, and it's a choice I would not envy any mother having to make. I do understand what you said about your pregnancy, though. I bonded strongly with each of my babies during pregnancy and wouldn't have missed a minute of it regardless of outcome! I loved being pregnant! I was lucky in that I had 3 successful pregnancies, though I did come very close to losing my younger son. Even with what he and we went through, I wouldn't have terminated that pregnancy had I known because there was hope. I just would have made sure he had the best care immediately instead of them fumbling around for several days wondering what was wrong and nearly losing him! Unfortunately, the technology wasn't there then to make diagnosis easier. I do know that experience changed me forever, as does every important or traumatic event in one's life. It made me stronger and more resilient and made me appreciate my children more.

I had a grandson born this July (son of my cardiac kid) and they thought they detected a cardiac problem at about 5 mo with him. My son's pediatric cardiologist was put on alert, a Level II u/s was done and films sent to him, and all was in place for a potential problem within days. The Level II (fortunately) showed that the routine u/s was somehow distorted or misread and Ian was born perfectly healthy on 2 July. The u/s technology made it possible for us to make choices to best insure his survival and health had there been a problem, though. It had already been decided that if there were a problem he would be born in Boston, Philadephia, or San Diego where we knew some of the best pediatric cardiac surgeons instead of in the small town hospital in Kentucky where they live. That is the big difference the technology can make and why u/s can be so important.

As I mentioned earlier, a friend here lost a full term baby girl a few weeks ago (her first). Her's was a situation that might have been avoided by an u/s in the last few weeks as the cord was too short and caused the placenta to detach in the center in early labour, but it was also something that could have been totally overlooked. Russia is not the safest place to have a baby, but there are situations that occur that even the very best care can't provide a better outcome. Ideally, the short cord would have been noted by u/s and a c-section scheduled, but that might not have happened even if she had been at Johns Hopkins! As it was, the baby died during early stage 1 labour as the cord died from loss of blood supply with each contraction. There was no heartbeat by the time she got to hospital at the point in labour they tell you to go to hospital. It happens and this was something that could easily have been disregarded even with the best care and technology. Things do happen over which we have no control even with the best medical science has to offer. Unless she had been on a monitor from almost the first contraction they would not have been able to determine that the baby was in distress, and the way her placenta detached there was no outward indication of problems. As it was, they did a pretty good job saving her and there is no reason she can't have more children. They just need to monitor her closely (u/s being the best tool available to do that) and make sure she is under medical care at the time her labour starts or have a scheduled section before labour begins. She will never completely "get over" losing that baby girl, though, will probably always wonder if she could have done something to prevent it (there wasn't), and her subsequent children will be affected by that first pregnancy.

Sorry, I kind of went off a tangent. I mainly posted again to express my sympathies. Losing a baby/child at any stage/age is out of sync and is the worst grief imaginable.:( Though that child can never be replaced, I hope you have other children as they do help ease the grief.

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