WWYD? High risk for malignant hyperthermia and hyperkalemic cardiac arrest under general anesthesia--and pregnant

[Reya]

So I've had 2 kids completely naturally. The very small "interventions" that the doctors and staff did made things worse rather than better. Honestly, I would have been better off having the kids at home both times.

 

But I got to the hospital not for what is likely to happen but what is unlikely. There is a possibility, however slight, of a severe complication, which means that a C-section would actually be life-saving.

 

Here's the deal: I just found out that my muscle disorder carries some pretty serious risks that I didn't even know about if I have general anesthesia with inhalational agents, particularly with depolarizing agents. I could develop malignant hyperthermia and die, or I could go into cardiac arrest.

 

An epidural or spinal would carry no risk of these things. HOWEVER, if I have a C-section under ANY circumstances, my recovery will be brutal because of my muscle disorder, and longterm effects are extremely likely because I just don't heal like other people. So minimizing the chances of a C-section are smart.

 

In addition, epidurals aren't always adequate for a C-section, so if an epidural raises my chances for a C-section, then it could also raise my chances for a general anesthesia!

 

My plan was to check in at crowning. It's my third birth, and I want to be LEFT ALONE by the nurses until the last possible moment. My OB/GYN, who is honestly none too bright, wants me to get an epidural when I hit the door. I said my risk factors for a C-section are about as low as they could be. She said there could be an obstetric emergency in which there wouldn't be time for a spinal. I said, "Like what?"

 

Her examples? Cord prolapse, fetal distress, and nuchal cord.

 

What the HECK?????

 

Cord prolapse is only possible if the head is not engaged. I am not an idiot. I can tell when the head is engaged and when it isn't--no ultrasound needed. My babies BOTH had engaged heads from well before the very first contraction. If the head isn't engaged when labor begins, fine, I'll come in. But if it's engaged, there isn't going to be a prolapse. It's not possible.

 

Nuchal cord--um, WHAT???? In what universe does a nuchal cord, which can only be diagnosed AFTER THE HEAD AND NECK HAVE EMERGED, possibly be in any way an indication for a C-section??????? Nuchal cords aren't even associated with ANY kind of poor outcome except when some idiot OB decides to clamp and cut it instead of performing a somersault maneuver.

 

"Fetal distress" is NOT something that happens instantly. It is not a matter of two minutes, life or death. It comes on gradually during the delivery with tons of warning. That's why continuous monitoring doesn't improve long-term fetal outcomes.

 

If she'd said "shoulder dystocia that can't be resolved except by fetal replacement and C-section"--then I'd believe her. But here's the deal. I have maybe a 1.7% chance of ANY shoulder dystocia, and less than a 1% chance of the dystocia being so serious that replacement is required. So that's less than a 1 in 1000 chance. And if she's said, "placental abruption," again, I'd agree. This is, of course, a much higher risk in women who have had C-sections and women who have had previous abruptions, neither of which apply to me--and won't after this baby if I avoid a C-section this time, too.

 

As long as non-depolarizing agents are used, my risk is highly associated with the length of the surgery. So if the C-section occurs quickly, as in a TRUE EMERGENCY, then my chances for malignant hyperthermia, cardiac arrest, and muscle degradation are phenomenally low.

 

At this point, I'm considering blowing my OB off. I mean, this is the same woman who told me seriously that foot massages can cause miscarriage. I'm consulting a (much smarter!) perinatologist on Monday and I'll seek his input, but I think that with non-moronic procedures and using the right anesthesia, if it does prove necessary, my chances of developing any serious complication related to my muscle disorder are low.

 

Any thoughts from the Hive on what you would do?

[phathui5]

Wow. Can you switch to another provider? I don't know that I would want her at my birth.

 

Also, have you considered waterbirth? I know that some hospitals are doing it now and it would provide pain relief without medication and lower your chances of surgical delivery.

[Reya]

I'm in an HMO. To get a waterbirth would require $6000 more. I don't want ANY pain relief. I haven't had any with my others. I want to be left alone, really!

 

I will get who I get with the OB/GYN practice, and that's pretty true universally around here. Chances that I'll get her are around 10%. Most likely, I 'll get someone I've never met before.

 

My condition makes natural labor WEIRDER but not more dangerous if the OB/GYN understands what's going on. I'll ask the MFM/perinatologist if he might possibly, under any condition be able to be in the delivery room so the OB/GYN and anesthesiologist on call doesn't screw things up. :/

 

I also said that I need to meet or at least call the head of obstetric anesthesiology at the hospital because of the risks to make sure that the wrong agent wasn't used on me. My idiot OB/GYN said, "Oh, well, you know they do malignant hyperthermia drills!"

 

Um, yes, you moron, I do, and I know that 5% of people who develop MH still DIE despite the drills, and since it can largely be avoided, wouldn't that be way smarter?????

[Melissa in Australia]

you could always come to Australia for your birth. They don't have nearly as much intervention. I have never heard of someone having an epidural put in just in case??? The doctors here are more into natural childbirth.

 

Mothers are allowed to walk around,and are encouraged to give birth in any position that they care to try. In fact, MY dr always commented to me that of the 1000's of babies he has delivered, I and one other were the only ones that gave birth lying on our side.

[mumto2]

During my high risk pregnancies the perinatologist essentially became my OB. I could no longer be seen or receive advice from my OB who I really respected. It basically depends if they are willing to transfer you in as a patient or not. Not sure how things work now in the US or with an HMO. I was BCBS and they were part of a teaching hospital.

 

Also be prepared because in my opinion the policies in the perinatology practice were much less flexible then my original OBs. They had tons of protocol which I did not agree with but lived through in order to have them for my doctors. The thing you will like the most is they were very prepared to discuss the statistics of my situation.

[hellen]

I think you need somebody at the birth with a lot of medical knowledge who will advocate for you. You don't seem to have much trust with this practice which I know from personal experience is not ideal. An even better solution is finding a doctor you trust. I think it would be worth driving further, paying more, etc. for the peace of mind for the remainder of your pregnancy and the birth.

 

As far as your plan to arrive crowning, if you go that route you will need a way to get inside from the parking lot. I showed up nearly crowning with my third and if there hadn't been somebody discharged in a wheelchair at five am I would have had the baby in the parking lot because I wasn't going to walk inside at that point. In hindsight my husband could have run in or done any number of things but since it was unexpected and happening so fast he didn't know what to do.

[RoughCollie]

I think you should see the perinatologist and wait to make decisions until you have received his input.

 

What it boils down to is this: How much risk you are willing to assume. It doesn't matter how small a serious risk is, if it happens to you and your baby.

 

When I got pregnant with my boys, there was a 1% chance that I would get pregnant with triplets, and a very low chance that I would get pregnant at all. I assumed the risk, and immediately got pregnant with triplets. I was shocked because the risk had been so low that triplets weren't even on my radar. I decided to try IVF one time, and voila! The same thing happened to my cousin, and she has triplets too, after one extremely low risk IVF cycle.

 

When I got pregnant with DD, there was a 10% chance that if I underwent natural childbirth, both DD and I would die from complications arising from the fact that two of the triplets were born via emergency c-section. The risk was not one I was willing to take, mainly because I had three 18 month old babies at home who needed me.

 

Now when I look at risk, I ask myself whether the consequences of the worst case scenario would be acceptable to me, especially if it is a life and death matter, and if the outcome will seriously effect someone who depends on me.

 

I had a high degree of trust in my perinatologist who was my doctor during both of my pregnancies. That trust, and the decisions I made during both pregnancies, were not based on gut feelings or the advice of people who were not medical professionals who were very familiar with my case. If DH and I disagreed with something he recommended, we discussed it with him. If we wondered whether his advice was based on hospital policy or malpractice insurance concerns, we discussed it with him. If we had reservations about his advice, we would have sought a second opinion from another perinatologist. The one time we did not take his advice was because it was hospital policy that he tell us the risks and the options, and we were determined to assume the risks and not have my triplet pregnancy "selectively reduced". Our reason was not a medical one.

 

So, in a nutshell, my advice is to find a doctor you trust, after doing the necessary research to make sure your trust is well-founded and based on facts. Then, when you find out what the risks are, decide what you are going to do based on whether you can accept the worst case scenario, because that outcome does happen to some people.

[Dmmetler]

Check with the perinatologist. I've had two different ones (my first went back to his med school as faculty), and both were very focused on getting both the baby and I through safe, both short and long term, and a lot more aware of options than my OB. I love my OB, but he'll be the first to tell you that he doesn't know everything about medically complicated pregnancies. I'm guessing you'll also need a cardiologist in the loop as well, and you may find that there's one who the perinatologist regularly consults with in such cases (there's a neuro in my area I've only seen when pregnant-that's basically what he specializes in).

[sbgrace]

You may not want to say what your muscle disorder is but are there protocols to make it safer? My son has similar issues due to a metabolic condition but he has safely been under anesthesia when absolutely necessary. His geneticist coordinated so that the safest anesthetics were used, no lactated ringers, etc. He did fine. I probably have the same condition as my son. I didn't know that at the time. I had an epi in place because our OB required it for twin births. During the pushing phase I had a baby, who was malpositioned, get part way out and go into distress. This was emergent rather than emergency. He did require CPR but we had enough time that they turned on that epi and did a c section. I was glad I had it in place so I didn't have to do general. I did decompose after that pregnancy. But with my condition that's extremely common c section or not. I don't think the surgery had a thing to do with it but more likely the body stress of pregnancy itself and the sleep deprivation after it.

 

My point is even if you leave this OB I would work with your specialist to come up with a protocol to make surgery as safe as possible for you. You need that anyway. There are many more reasons than birth which might make surgery necessary and some of those might be emergency situations. So I think you need a written plan if you don't already have one. If you do have one I would talk to anesthesia, or have your specialist do that ideally, ahead of your delivery so they know you are a special case. I would also make sure loved ones are extremely familiar with what you need so they can advocate in an emergency, consider a medic alert bracelet to specify what anesthetics aren't safe, etc.

[prairiewindmomma]

I was stuck on hospital bedrest this last pregnancy and their policy was that it took a ten minute bradycardia for them to do a cesarean for fetal distress. (I had several 9.5 minute ones.) I had an iv in place so they could do fluid boluses and they would reposition me and stick oxygen on me.

 

I was at a major hospital with a trauma surgeon and anesthesiologist on floor. I was able to get a spinal asap when my emergency cesarean was required. In the 5 min it took to wheel me down the hall and do my spinal, the full nicu team made it downstairs with the giraffe bed and an assistant surgeon was brought in.

 

It really depends on the hospital you are at. We knew in advance what a mess I was medically so we had plans in place so when things fell apart we could move....

 

When you are running that kind of risk, I would be having serious discussions with the peri to have him/her lay down the law with the ob on protocols. (Peris don't deliver here---only obs.)

[Carol in Cal.]

I would be surprised if they would give you an epidural at crowning. I think it is generally considered too late by then. So if they needed to intervene you're probably looking at no anesthesia or possibly a general (but probably not.) That's what I would check on with another ob.

[Reya]

Also be prepared because in my opinion the policies in the perinatology practice were much less flexible then my original OBs. They had tons of protocol which I did not agree with but lived through in order to have them for my doctors.

 

Wait...how can anoyone possibly be LESS flexible than a typical OB????

[Reya]

I think you need somebody at the birth with a lot of medical knowledge who will advocate for you. You don't seem to have much trust with this practice which I know from personal experience is not ideal. An even better solution is finding a doctor you trust. I think it would be worth driving further, paying more, etc. for the peace of mind for the remainder of your pregnancy and the birth.

 

As far as your plan to arrive crowning, if you go that route you will need a way to get inside from the parking lot. I showed up nearly crowning with my third and if there hadn't been somebody discharged in a wheelchair at five am I would have had the baby in the parking lot because I wasn't going to walk inside at that point. In hindsight my husband could have run in or done any number of things but since it was unexpected and happening so fast he didn't know what to do.

 

I stayed with the HMO because when I had a PPC before, I went to the ONE practice recommended by the birth center (not covered by my plan), and they sucked, too. I tore at birth STRICTLY because of lack of communication on their part. Not badly, but still....

 

I was planning on leaving home around or shortly before transition and to labor unnoticed in the ER until crowning or pretty darned close to.

[Reya]

I was stuck on hospital bedrest this last pregnancy and their policy was that it took a ten minute bradycardia for them to do a cesarean for fetal distress. (I had several 9.5 minute ones.) I had an iv in place so they could do fluid boluses and they would reposition me and stick oxygen on me.

 

I was at a major hospital with a trauma surgeon and anesthesiologist on floor. I was able to get a spinal asap when my emergency cesarean was required. In the 5 min it took to wheel me down the hall and do my spinal, the full nicu team made it downstairs with the giraffe bed and an assistant surgeon was brought in.

....

 

When you are running that kind of risk, I would be having serious discussions with the peri to have him/her lay down the law with the ob on protocols. (Peris don't deliver here---only obs.)

 

I've always had a full NICU team because my babies always poop during labor. My labor is HARD. Really, really HARD. My first labor from 0 cm to holding the baby was 12 hours--active labor was about an hour, and most of that was waiting for the @#@$ OB to SHOW UP, which the nurses DIDN'T TELL ME was what they were waiting for. I black out if I do "purple pushing"--didn't realize this was not normal until my second birth when my OB was saying "keep pushing!" (she thought there was a dystocia when none existed, but that's another topic....) and I said, "I'm passing out!" Hmmm, give me oxygen, and everything is fine. Amazing how much easier it is to keep pushing when you have enough oxygen. And AMAZING how much happier the baby is, too.

 

I am planning on a heplock, but I'd rather not get an IV because the IV is cold, and that makes my muscle condition WAY worse and also puts me at risk for exercise-induced anaphylaxis. (That's the only thing that could trigger EIA in a birth scenario, but with a cold IV that's turned up too high, it becomes a real risk. I had an evil nurse last labor who turned up my IV to punish me for going natural--apparently, she's infamous for stunts like this--and I started to have a reaction and told her to turn it down NOW or it's coming out.)

 

Yes, only obs deliver here, too, and I think I'm going to at LEAST ask for that.

[jillian]

Switch to someone else you are comfortable with.

[Reya]

When I got pregnant with DD, there was a 10% chance that if I underwent natural childbirth, both DD and I would die from complications arising from the fact that two of the triplets were born via emergency c-section. The risk was not one I was willing to take, mainly because I had three 18 month old babies at home who needed me.

 

Now when I look at risk, I ask myself whether the consequences of the worst case scenario would be acceptable to me, especially if it is a life and death matter, and if the outcome will seriously effect someone who depends on me.

 

I had a high degree of trust in my perinatologist who was my doctor during both of my pregnancies. That trust, and the decisions I made during both pregnancies, were not based on gut feelings or the advice of people who were not medical professionals who were very familiar with my case. If DH and I disagreed with something he recommended, we discussed it with him. If we wondered whether his advice was based on hospital policy or malpractice insurance concerns, we discussed it with him. If we had reservations about his advice, we would have sought a second opinion from another perinatologist. The one time we did not take his advice was because it was hospital policy that he tell us the risks and the options, and we were determined to assume the risks and not have my triplet pregnancy "selectively reduced". Our reason was not a medical one.

 

So, in a nutshell, my advice is to find a doctor you trust, after doing the necessary research to make sure your trust is well-founded and based on facts. Then, when you find out what the risks are, decide what you are going to do based on whether you can accept the worst case scenario, because that outcome does happen to some people.

 

My condition is incredibly rare. Few anesthesiologists know much about it. Most of the risks are similar to people with muscular dystrophy, and there ARE protocols. I am calling the obstetric anesthesiologist soon to see what my general anesthesia options are, if general is necessary, and that will factor highly into my decision, too.

 

My risk of needing a truly EMERGENCY C-section necessitating general anesthesia is MAYBE .5% if I go natural. The only situations that would cause this are 1) rapid placental abruption (I am low risk), 2) shoulder dystocia requiring replacement and C-section (low risk again), 3) amniotic embolism (also low risk). Part of the reason that I'm low risk for these things is that I've never had a C-section before, which raises the risk of 2 of the 3, while a CURRENT C-section dramatically raises the risk of the last!

 

The level of risk that I have during general is related 1) to the use of depolarizing muscle relaxants (these are bad) and 2) to the use of inhalational agents (potentially bad but less bad). It's also highly correlated to the length of the surgery--a six-hour surgery is 100 times more dangerous than a one-hour surgery. My particular condition is so very rare (incidence of 1:100,000, with most people undiagnosed) that there are no good statistics on how long is too long, but I believe from what research has been done that a one-hour surgery under general with no depolarizing agents is generally quite safe. With complications, my chance of death would be as high as 10%. But the chance of complications should be extremely low even with general if they don't give me anything stupid given how short a C-section generally is.

 

The problem is that "worst case" can't be wholly avoided. Since my labors are hard, the babies show fetal distress off and on, anyway, Epidurals raise the chance of fetal distress. Walking in with an epidural would dramatically rase the likelihood of SOME sort of C-section given this, which, given that I don't metabolize MANY drugs properly, is going to be an extremely difficult experience, anyhow. Only 90% of epidurals work well enough for a C-section, so there's a risk of general anesthesia, anyway. I wouldn't actually be avoiding general anesthesia altogether if I went the epidural route, and it contains an unknown level of risk for fetal distress for me. The more I examine it, the more the epi looks like rolling the dice versus natural, which has been PROVEN in my case to go well.

 

My perinatologist is neither jumpy nor an idiot, neither of which can be said about my OB/GYN. I do trust him, and that's why I'm scheduled to talk to him BEFORE my OB next. I think that he and the hospital's anesthesiologist will together help cement my decision.

[dirty ethel rackham]

Can you get an experienced doula? In addition to getting all of your ducks in a row before the birth (making sure that everyone on board knows how to keep you safe.) But a doula who is well-versed in your condition can help keep you safe by asking questions and helping you get what you want. I would never enter a potentially hostile situation without a good doula - well worth the money and, in your case, possibly life-saving.

[mumto2]

 

 

Wait...how can anoyone possibly be LESS flexible than a typical OB????

 

With my original OB they functioned differently in terms of their partnership. It was a great practice where my concerns were always listened to and quite honestly unless hospital policy was being violated if I did not want different testing etc. My wishes were honored as long as dh and I clearly understood what we were refusing.

 

My perinatologist had protocol for most things. It was a partnership of four and exceptions had to be approved by three. I had to have many tests that I would have rather skipped in order to be their patient for subsequent pregnancies. They ended with miscarriages.

 

I adored my perinatologist and completely credit him with ds being the bright healthy boy that he is. To be honest I did not personally care for two of the doctors in the practice but they were highly qualified and familiar with my case. I was very lucky to be admitted to the hospital the night I was or a different doctor would have been primary. The fact that my treatment was laid out by that particular doctor was definately in my best interest. They bickered over me for months with what was laid out originally being the master plan and I held them to it. Their practice was quite frankly a political nightmare.

 

That is why I found my OB easier.

[Reya]

Can you get an experienced doula? In addition to getting all of your ducks in a row before the birth (making sure that everyone on board knows how to keep you safe.) But a doula who is well-versed in your condition can help keep you safe by asking questions and helping you get what you want. I would never enter a potentially hostile situation without a good doula - well worth the money and, in your case, possibly life-saving.

 

There are no doulas well-versed in my condition. It's too rare. There are few NEUROLOGISTS well-versed in my condition, and it's a neuromuscular disorder! 95%+ of neurologists are like, "Huh, well, I've HEARD of that......"

 

I'd have to find someone the OB AND anesthesiologist would listen to and respect. Which is why I'm asking the perinatologist first--built-in respect.

[Reya]

With my original OB they functioned differently in terms of their partnership. It was a great practice where my concerns were always listened to and quite honestly unless hospital policy was being violated if I did not want different testing etc. My wishes were honored as long as dh and I clearly understood what we were refusing.

 

My perinatologist had protocol for most things. It was a partnership of four and exceptions had to be approved by three. I had to have many tests that I would have rather skipped in order to be their patient for subsequent pregnancies. They ended with miscarriages.

 

I adored my perinatologist and completely credit him with ds being the bright healthy boy that he is. To be honest I did not personally care for two of the doctors in the practice but they were highly qualified and familiar with my case. I was very lucky to be admitted to the hospital the night I was or a different doctor would have been primary. The fact that my treatment was laid out by that particular doctor was definately in my best interest. They bickered over me for months with what was laid out originally being the master plan and I held them to it. Their practice was quite frankly a political nightmare.

 

That is why I found my OB easier.

A

 

h. Well, there are only 2 perinatologists in this practice, and mine has seniority by like 20 years and makes his decisions alone. Also, he is QUITE Christian and is very supportive of "this is the baby I'm going to have, and I don't want to lower its chances of birth for anything." He'd never insist on invasive tests. My second OB practice was considerably more obnoxious about refusing testing. (Actually, to give credit where credit is due, this OB is okay with that! She didn't try to lecture me about it at all.) There is no way under any circumstances that I would agree to invasive testing.

 

But of course "baby problems" isn't why I'm high risk. I'm only high risk IF I have to undergo a C-section. If I avoid it, I'm low risk.

[mumto2]

Sounds like you are very fortunate to be in the practice you are in. Enjoy it -- it sounds quite peaceful. I will pray for a safe and easy delivery for you.

[dirty ethel rackham]

What I meant by a doula well-versed in your situation is one that you would educate about your situation and who would be able to help you get what you want and watch out for things that could be harmful in your case - another voice to keep you protected from things that could harm you.

[Reya]

What I meant by a doula well-versed in your situation is one that you would educate about your situation and who would be able to help you get what you want and watch out for things that could be harmful in your case - another voice to keep you protected from things that could harm you.

 

Gotcha. I've already arranged for my mother to be there, and she's going to be doing this. She had one epidural birth (back when they didn't get jumpy about "failure to progress) and one natural.

 

My husband will be in the room, but honestly, he's just a warm body in this situation, though I can get him to rub my back. :p

[Reya]

Sounds like you are very fortunate to be in the practice you are in. Enjoy it -- it sounds quite peaceful. I will pray for a safe and easy delivery for you.

 

It all depends on the role that the perinatologist agrees to take on! Honestly, if I can get him on board enough, I won't really be anxious at all. If I get OB/GYN-of-the-day club and an OB who won't listen, things can go south fast. :/

 

Thanks for the prayers!

[Guest]

I think you should see the perinatologist and wait to make decisions until you have received his input.

 

What it boils down to is this: How much risk you are willing to assume. It doesn't matter how small a serious risk is, if it happens to you and your baby.

 

:iagree:

 

 

 

My risk of needing a truly EMERGENCY C-section necessitating general anesthesia is MAYBE .5% if I go natural. The only situations that would cause this are 1) rapid placental abruption (I am low risk), 2) shoulder dystocia requiring replacement and C-section (low risk again), 3) amniotic embolism (also low risk). Part of the reason that I'm low risk for these things is that I've never had a C-section before, which raises the risk of 2 of the 3, while a CURRENT C-section dramatically raises the risk of the last!

 

 

I'm saying this gently and with the best of intentions. I was very low risk. I had two previous perfectly normal, healthy vaginal births. I had a perfectly normal, ideal pregnancy. I had fantasies of having an "accidental-on-purpose homebirth" because I was so totally disinterested in having medical staff pestering me. I planned a birth center birth with midwives. Turned out that I had a precipitous labor and a complete placental abruption. My baby died while I was 5 minutes from the hospital.

 

I say this because low risk does not mean NO risk. I never in my most horrific nightmare thought my baby could die in labor; there was no reason at all to think that could possibly happen to me. I also could have bled to death myself. I'm not trying to be a beast by having the most horrible birth story on the board. But I so fantastically regret my annoyance at medical people who wanted to pester me with their medical interventions. I am so sorry I avoided any "horror stories" that were out there and selectively listened only to natural-birth advocates. I really want a do-over.

 

I don't recommend that you carry out your "plans" of coming in at the last possible moment. I would defer to the perinatologist, whom I expect will know how best to handle your specific medical concerns. :grouphug:

[prairiewindmomma]

With the others on the don't come in last minute....forgot to post that before. Also, if peri isn't up to date on his research, have your neurologist or other specialist call and chat with peri. My peri practice chatted with my endo and my rheumy to get up to speed on how my other health issues were affecting my pregnancy and to get advice as to whether I had to come off of one of my meds because I was having chronic partial placental abruptions...

[Reya]

:iagree:

 

 

 

 

I'm saying this gently and with the best of intentions. I was very low risk. I had two previous perfectly normal, healthy vaginal births. I had a perfectly normal, ideal pregnancy. I had fantasies of having an "accidental-on-purpose homebirth" because I was so totally disinterested in having medical staff pestering me. I planned a birth center birth with midwives. Turned out that I had a precipitous labor and a complete placental abruption. My baby died while I was 5 minutes from the hospital.

 

I say this because low risk does not mean NO risk. I never in my most horrific nightmare thought my baby could die in labor; there was no reason at all to think that could possibly happen to me. I also could have bled to death myself. I'm not trying to be a beast by having the most horrible birth story on the board. But I so fantastically regret my annoyance at medical people who wanted to pester me with their medical interventions. I am so sorry I avoided any "horror stories" that were out there and selectively listened only to natural-birth advocates. I really want a do-over.

 

I don't recommend that you carry out your "plans" of coming in at the last possible moment. I would defer to the perinatologist, whom I expect will know how best to handle your specific medical concerns. :grouphug:

 

 

So sorry to hear of your loss. This possibility is exactly why I'm going to be in a hospital at all. Otherwise, I WOULD have a homebirth. Ideally, I wanted to be attended by midwives in a hospital with an OB backup, but unfortunately, that's not a option for me here.

 

I assure you I will be IN the hospital much earlier than crowning--I plan to leave home before transition. I was considering not CHECKING IN until I really needed the privacy, laboring either in the ER or in the maternity ward's waiting room. I was initially planning on checking in when my water breaks, if I'm really miserable then (which happens late in transition for me, at least so far), or to wait even later.

 

I will most likely have my husband drive me to the hospital campus quite early on because it is a long drive and you can't always tell when "huh, I guess labor's starting" turns into "baby is coming NOW!!!!"--possibly even during the first part of early labor (which I've always clearly felt in the past). I just want to stay under the radar until labor turns into, "really, this is LABOR," which would likely be some time between the beginning of transition and crowning.

 

For me, "pestering" can actually cause adverse health events, which can be life-threatening. It isn't that I don't want to be annoyed. I can deal with being annoyed. I don't want to be HURT!

 

It is INCREDIBLY hard to get some professionals to LISTEN. When they are dealing with something they aren't familiar with, some people pretend it doesn't matter. My last nurse nearly precipitated an episode of exercise-induced anaphylaxis (which the a second weird condition I have) during labor. EIA is not normally much of a health risk, despite the super-scary name, because if you start to get a reaction, you stop the exercise, and the reaction goes away. THERE IS NO STOPPING LABOR. So there would be no stopping the progress of an anaphylactic reaction until my airways are entirely obstructed. Normally, the onset of even a precipitous labor is plenty slow enough that in itself natural labor poses no risk for EIA. Combine it with a cold IV at a high drip, since cold is in EIA trigger in many people, including me, it suddenly becomes a very immediate possibility.

 

So last time, my nurse could have killed me. I had to basically pitch a fit to get her to stop.

 

Time before that, the nurses told me to blow for over 45 minutes into stage II. The result was that my son suffered severe fetal distress, to the point that I was seconds from having a vacuum extraction. Reason for having me blow? I found out later that the OB/GYN hadn't arrived and the nurses didn't want to catch. They actually LEFT ME ALONE IN THE ROOM blowing for most of that time. My son could have died, and they wouldn't have known until they bothered to do a drive-by in ten minutes. Oh, and they left me alone AFTER having discovered meconium in my amniotic fluid.

 

So the first time, the nurses could have killed my son.

 

Since I and my baby have been actively put into real, immediate dangers by the actions of the hospital staff in the past, my level of concern is quite high that this is the most likely cause of a complication in this birth.

 

Anyhow, I've gotten the phone number for the head of obstetric anesthesia, and I'll talk to him tomorrow. If what he says is reassuring, the routine epidural is out the door.

[Reya]

With the others on the don't come in last minute....forgot to post that before. Also, if peri isn't up to date on his research, have your neurologist or other specialist call and chat with peri. My peri practice chatted with my endo and my rheumy to get up to speed on how my other health issues were affecting my pregnancy and to get advice as to whether I had to come off of one of my meds because I was having chronic partial placental abruptions...

 

 

Yeah, I think that may be off the table now. Still not CHECKING in until well into active labor, though.

 

The BIG issue is the epidural. The epidural could make things way, way dicier for me.

 

No peri is up to date on my condition. None. I'm seeing the neurologist earlier in the day before I see the peri, too. :/

[LMA]

Are the doctors you will speak with the ones who will attend to your birth? Will the anesthesiologist you speak with be the one administering it?

 

You can put all kinds of plans in and they go out the window because the doctors who were supposed to be the one at the birth isn't there. The plans from various doctors can be in your records, but there is no guarantee that the attending staff will adhere to them. I totally agree with you that it is impossible sometimes for hospital staff to listen to patients and I know they don't look at papers either. I see this as the biggest issue - getting the drs. who attend to the birth to listen.

 

One more issue is that if you don't want the OB's plans and the hospital staff agrees with them, the hospital can refuse to allow you to be a patient there. That has happened to people I know for other kinds of treatments.

[Reya]

Are the doctors you will speak with the ones who will attend to your birth? Will the anesthesiologist you speak with be the one administering it?

 

You can put all kinds of plans in and they go out the window because the doctors who were supposed to be the one at the birth isn't there. The plans from various doctors can be in your records, but there is no guarantee that the attending staff will adhere to them. I totally agree with you that it is impossible sometimes for hospital staff to listen to patients and I know they don't look at papers either. I see this as the biggest issue - getting the drs. who attend to the birth to listen.

 

One more issue is that if you don't want the OB's plans and the hospital staff agrees with them, the hospital can refuse to allow you to be a patient there. That has happened to people I know for other kinds of treatments.

 

 

Nope. Which is the BIG problem. I'm going to speak with the head of anesthesiology, but I'll get whoever shows up, probably. He'll have to be responsible for communicating with the whole department, but I haven't yet met a stupid, incompetent anesthesiologist, and neuromuscular disorders are something they treat INCREDIBLY seriously.

 

I think I can get the peri on my side as far as no medical need for an epidural. Since I'm approaching the head anesthesiologist directly, if I can get him on my side, too, that will be a big win. He will poop a BRICK when I tell him my OB told me I didn't need to talk to him because all hospitals do malignant hyperthermia drills. Probably have a litter of kittens, too. That's like saying that you can go ahead and do a vaginal labor with a partial placenta previa without even warning your OB because they do drills for when people have sudden abruptions and hemorrhages.

 

The OB is what I'm really, really concerned about, and the nursing staff. It's a crap shoot, and they can seriously screw me up by making bad choices. :(

[dirty ethel rackham]

Could you put together some documentation to be put in the front of your file that includes explanations of your various conditions and what you absolutely cannot have (and also have copies with you to hand to the nurses.) Perhaps these explanations with doctors sign off could help prevent dangerous interventions.

[mumto2]

I mean this very kindly but I think your chance of a smooth labor would be increased if you arrive at the hospital early and the nursing staff get to know you before decisions such as IVs become routine must do in their minds. If you are able to explain things clearly before you are too far along in your labor I would hope that they will work with you as long as your doctor verifys the instructions. There is more time for that if you are there and assigned to your nurse. Also remember that sometimes L and D is full. It was the day ds was born......it did not matter that I was already a hospital patient or knew most of the staff. I labored in the c section recovery area and got a room with a half hour to spare. It was pretty scary because it went quick and dh got stuck in traffic. I was by myself with staff for most of the time. A side note is he did a great job during the delivery. I felt really safe.

 

If you trust the perinatologist talk to him about your delivery plans and get his opinion on when to arrive at the labor and delivery area. You need to develop the best relationship possible with him.

 

 

[dirty ethel rackham]

I mean this very kindly but I think your chance of a smooth labor would be increased if you arrive at the hospital early and the nursing staff get to know you before decisions such as IVs become routine must do in their minds. If you are able to explain things clearly before you are too far along in your labor I would hope that they will work with you as long as your doctor verifys the instructions. There is more time for that if you are there and assigned to your nurse. Also remember that sometimes L and D is full. It was the day ds was born......it did not matter that I was already a hospital patient or knew most of the staff. I labored in the c section recovery area and got a room with a half hour to spare. It was pretty scary because it went quick and dh got stuck in traffic. I was by myself with staff for most of the time. A side note is he did a great job during the delivery. I felt really safe.

 

If you trust the perinatologist talk to him about your delivery plans and get his opinion on when to arrive at the labor and delivery area. You need to develop the best relationship possible with him.

 

Actually, I strongly disagree with this. The longer you are at the hospital, the more likely it is that you will have interventions. That gives the nursing staff and doctors more time to wear you down. I taught childbirth classes for 12 years. In my experience, one of the biggest predictors of getting unwanted interventions was getting to the hospital too soon. Hospitals are not good places to labor. Nursing staffs usually don't like women who don't "obey their rules" no matter how arbitrary they may be. Most rules are not about patient safety, not evidence base, but about convenience for the staff. When you are laboring, you are not in a good position to have discussions. This is why these discussions need to take place ahead of time. Also, the more hostile the environment, the more necessary a well-trained, firm but diplomatic doula can be.

 

ETA: I came across as very harsh against doctors and nurses and don't mean to be. The problem is that the training paradigm assumes that labor is very dangerous and needs to be controlled. A birth without all the technology and drugs are outside their comfort zones. Many have never even seen a low-tech, unmedicated birth. They will do what they need to do to move into their comfort zone. That is where many come from. Unfortunately, there are also nurses and doctors who are misogynistic and who "punish" laboring women for not fitting into their protocols. I have seen it. They give the rest a bad name.

[Reya]

Could you put together some documentation to be put in the front of your file that includes explanations of your various conditions and what you absolutely cannot have (and also have copies with you to hand to the nurses.) Perhaps these explanations with doctors sign off could help prevent dangerous interventions.

 

Yes! :) I am going to be doing that over the next several weeks--getting my allergist to ask for warm blankets + warm IV, etc., and the neurologist and anesthesiologist to sign off on other best practices (such as normal saline, etc.). The standard anesthesia protocol for my condition is now on the first page of my file--but that's the file in my OB's practice, NOT the hospital, which is a different system.

 

I will hand copies of the sheets to everybody who comes into the room.

[Reya]

I mean this very kindly but I think your chance of a smooth labor would be increased if you arrive at the hospital early and the nursing staff get to know you before decisions such as IVs become routine must do in their minds. If you are able to explain things clearly before you are too far along in your labor I would hope that they will work with you as long as your doctor verifys the instructions. There is more time for that if you are there and assigned to your nurse. Also remember that sometimes L and D is full. It was the day ds was born......it did not matter that I was already a hospital patient or knew most of the staff. I labored in the c section recovery area and got a room with a half hour to spare. It was pretty scary because it went quick and dh got stuck in traffic. I was by myself with staff for most of the time. A side note is he did a great job during the delivery. I felt really safe.

 

If you trust the perinatologist talk to him about your delivery plans and get his opinion on when to arrive at the labor and delivery area. You need to develop the best relationship possible with him.

 

BWAHAHAHAHA!!!!! Sorry. But that's exactly what I did last time because after my first labor, where I went from "oh, look, she's beginning active labor" to "HERE'S THE BABY!" in 3 hours, the nursing staff told me again and again to FLY to the hospital at the first twinge for my second labor. So I did.

 

I had TONS of time to discuss with the nurses what I needed--at that time, the exercise-induced anaphylaxis was really the only thing on my radar because I didn't know of the big risks associated with my muscle disorder. The nurse read it, admitted she HAD NEVER HEARD OF IT, and yet then proceeded to flip out, yell at me, and tell me that I should have had a scheduled C-section.

 

I said that's not what any of my allergists had EVER recommended, and that what was important was for me not to get chilled. As long as I don't get chilled, there is no risk.

 

So this nurse then turns up the IV so high that I start to shiver and begin to have an attack. I honestly think she did it out of spite. She's well known for being spiteful to anyone who attempts a natural birth. (She did a bunch of other things, too, BTW, but none that were as dangerous.)

 

Anyhow, L&D around here isn't ever full. Too many competing hospitals.

 

I really like my perinatologist. He is SENSIBLE and doesn't call for useless interventions just because interventions are possible. My OB is a complete flake, so I don't think her opinion is worth jack. But the peri and hopefully the neurologist and anesthesiologist should all be reasonable.

[Reya]

The problem is that the training paradigm assumes that labor is very dangerous and needs to be controlled. A birth without all the technology and drugs are outside their comfort zones. Many have never even seen a low-tech, unmedicated birth. They will do what they need to do to move into their comfort zone. That is where many come from. Unfortunately, there are also nurses and doctors who are misogynistic and who "punish" laboring women for not fitting into their protocols. I have seen it. They give the rest a bad name.

 

And that is EXACTLY what I had with my last nurse, and actually with BOTH the OB/GYNs who ended up catching my babies. My evil nurse could have killed me, and I had to fight BOTH the OB/GYNs for local anesthesia when they came to stitch me up.