I have passed the mystical age of 35 (by 2 years) which puts me into a “higher risk” group for just about everything pregnancy related. Particularly, doctors are concerned about increased risk of genetic abnormalities. Apparently, at 35 years old, you cross a threshold in which the risk of having a baby with a genetic abnormality is greater than the risk of miscarriage from amniocentesis.
Husband and I talked a long time about whether we wanted to do amnio or not. Pretty much, it came down to the question of, “Were there any circumstances in which we would terminate the pregnancy?” I originally thought there weren’t, but then I read a little on some of the nastier trisomies (fortunately quite rare). Husband and I decided that if our baby had a genetic condition that caused 50% of babies to be stillborn, 80% of the ones who lived to die in the first month, and 90% of those survivors to die in the first year, well, frankly it would be a mercy to the poor little tyke to terminate now rather than have it go through all of that suffering and damn the Pope and the Church for thinking otherwise.
So, we scheduled an appt. for my 16th week. My ob doesn’t do amnio herself, she refers her patients to a specialist, Dr. M, with whom she has been associated with for at least 15 years. So, Husband and I went to Dr. M’s office and talked to the genetic counselor* who recommended blood screening for cystic fibrosis for me and Tay-Sachs for Husband (who is of French Canadian descent; apparently, being French Canadian increases your risk for being a carrier of Tay-Sachs to 1 in 30). Then, it was time to do the amnio.
In case you are unfamiliar with amniocentesis, the procedure is done by doing an ultrasound to determine the position of the baby so the doctor knows where to insert the needle. A pretty comprehensive set of sonograms were taken and Dr. Assistant I (perhaps a resident or a fellow?) took all kinds of measurements on the baby (bone lengths and such). He also measured my ginormous fibroids. Then, Dr. M (a white-haired man who conceivably could have been doing amnio since it was first offered) came in to do the procedure. Well, he moved that ultrasound do-hickey around for a long time but between the position of the baby and the apparent minefield of little fibroids I have (not to mention the big ones), he was having trouble finding a good spot to poke me with the needle. So, Dr. M recommended I come back in two weeks to allow my uterus to grow more (evidently, fibroids do not grow as much in the 2nd and 3rd trimesters as they do in the first) to give him more surface area to work with. So, I scheduled another appt.
That appt. was today. In contrast to the previous appt. when we had a very good experience with the staff and doctors, this appt. was fairly disastrous. First, I had been having menstrual-type cramps most of the morning, so I wasn’t in the best state going into the appt. (though glad I coincidentally had a doctor’s appt. that day so I didn’t have to call up my ob). Second, the office was running an hour behind and the waiting room was so small that there were not enough chairs and husbands were all standing. Then, I was taken into a much smaller and less attractive exam room than my previous appt. (seriously, it looked like something you might find in an ancient, abandoned clinic somewhere) and Dr. Assistant II did all kinds of measurements AGAIN. I told her about the cramps. She seemed completely unconcerned, which was fine except that she kept asking me if I had been having contractions (yes, I think that’s what the cramps are!) and then proceeded to push the ultrasound do-hickey hard on one spot and ask if it hurt. Yes, thank you, it hurt quite a bit! So, she tells me I’m having a contraction there, but her primary concern about that seemed to be that it would interfere with the amnio. Okay, fine, I know you can have contractions pre-labor, though I didn’t think would start so early. However, I was starting to get very irritated and was about to say the following:
1. Stop asking me whether I had a contraction the last time I came in. I have already told you three times that nobody mentioned anything about it and I sure as hell didn’t feel anything. My answer is not going to change.
2. Stop telling me to relax. It’s very hard to relax when you have someone constantly admonishing you, “You must relax! You have to relax. Relax. Relax the muscle.”
3. If you don’t stop pushing that damn ultrasound thingy on the spot that I am apparently having a contraction I am going to take it from you and choke you with the cord. The contraction doesn’t hurt, you pushing on it does.
So, then Dr. M comes in with Dr. Assistant I. Now, there are three doctors, me, and Husband in this tiny little room in which I am supposed to be relaxing. Dr. M starts scanning my belly and looking for a good spot to do the amnio in between my field of fibroids. He says I have low fluid volume. I ask if it’s still safe to do the amnio in that case and he says, that it makes it more “technically challenging” is all and low fluid volume has “nothing to do with the amnio.” Um, excuse me, if I’m not mistaken, you are about to remove some of the fluid which you have just pronounced to be at sub-optimal volume. How can that not be related to whether the amnio can be done? So, he’s looking, looking, looking and he says that the contraction is making it difficult to find a good spot to do the amnio so he’s sending me out to the waiting room to “relax” and to sign a consent form for the use of terbutaline which they will give me to relax the uterus to make it easier to do the amnio. And he leaves the room.
Dr. Assistant II left some time ago. Dr. Assistant I is rushing us out of the room. “What are the risks of taking the medication?” I ask him. “What?” he says. “Are there risks associated with taking the medication?” I ask. “Yes, yes, of course there are risks, that’s why there is the form for you to read.” And he ushers us out into the waiting room and hands us a clipboard with a form on it.
It is now 1.75 hours since we entered the clinic. The amnio is not done. The doctors are not talking to me. I’ve been given a consent form (with several typos in it, not the most reassuring thing in the world) that explains what the medication is, what it’s supposed to do, what the side effects are, and the risks to the baby but I have no time or internet access to research the drug myself. I’m feeling rather overwhelmed. That’s when Husband asks if it’s okay if he goes outside to do a teleconference (!) until the doctor calls me back. I say no. He tries to persuade me it will be okay, he’ll come right back in when the doctor comes. We argue. In the waiting room. Where I’m supposed to be “relaxing.” Suddenly, it’s all too much and I start crying silently. Another woman in the waiting room disappears back behind The Door to the examining area and comes back with a box of tissues to give to me.
At that point, I go to the desk and say, “Look, I’m freaking out here and the longer I wait, it’s only going to get worse, so I want to speak to the doctor right now or I’m going to leave.” But, instead of the doctor, I am taken into the back (blessedly out of sight of the rest of the people in the waiting room) to talk to the genetic counselor. So, I explain what’s going on, that the doctor hasn’t talked to me about this AT ALL, that I want to know what the risks are of doing the amnio under these conditions, that I’m being made to make a decision about a medication I know nothing about and nobody has asked me if I’m currently taking other medications in case they interact badly, and frankly, I’m no longer sure that I’m willing to take the risk of doing the amnio under these conditions. The genetic counselor (who looks to be too young to need amniocentesis, and therefore I don’t believe she can understand where I’m coming from) is trying to tell me that the risks haven’t changed. This makes no sense to me whatsoever (and I tell her so) because the doctor has already stated that the amnio will be “technically challenging” that it will be difficult to not nick either the fibroids or the baby and that I’m having to take some medication for this to even work at all so this should put me into a different category than the one in which the original risk was calculated. My cost-benefit analysis has changed and I’m not sure how and I’m not being given enough time to decide if it’s what I want and I’ve not been given privacy to discuss this with Husband and the damn doctor won’t talk to me!** Nevertheless, the genetic counselor tells me that the worries about the drug are that it can cause increased heart rate and dizziness in me, that taking it will make the procedure easier and that if there still isn’t a good spot, the procedure won’t be done. Husband is okay with all of this and as I calm down, I’m starting to be more okay with it. But, as I told Husband, if there was any hemming and hawing on the part of the doctor, we were outta there.
So, we go back down to where the exam rooms are and Dr. Assistant II is trying to rush me into the third-world exam room because the good one is taken again. I insist upon going to the bathroom first and when I come out, husband says they are now talking about sending us to another one of their clinic locations. That is so not happening. So we’re in the waiting room, AGAIN, and I tell Husband I am waiting exactly five minutes and then I’m leaving. Nobody else is in the waiting room, I am now the last patient of the day, even though it’s only around 12:30 (it seems they go to another clinic location in the afternoon, this is why they were talking about sending me over there).
Finally, I’m back in the rinky-dink exam room. Dr. Assistant I tells me they are going to look with ultrasound to see if there’s a good spot. When I remind him this has already been done (did he forget me already??) he tells me that the baby moves sometimes after you walk around a bit and so the situation may have changed! Why the hell didn’t they mention this before? Why wasn’t that the first suggestion? Dr. M does his scanning thing again and, lo and behold, the contraction is gone, the baby has moved, there’s a good spot for doing the amnio and the thing is done without any medication whatsoever.***
So, now I am at home, on bed rest for the rest of the day as is routine post-amnio, complications or not, and I am supposed to take it easy the rest of the week (no exercise, no lifting over 20 pounds, no air travel, no sex). The results are supposed to be back in 10 days (they need to grow the cells, first, this is the longest part of the wait). If I wanted FISH done, I could have results back on trisomies in 2-3 days but it’s an extra $350 and we have some time yet if the results are bad.
So, that was my experience. I have to say, from a patient-friendly point of view, it was appalling. The clinic only does ultrasounds and amniocentesis and they seem to do them in a rather drive-thru-like manner. They had clearly overbooked for the day. There is no time or opportunity to sit and talk with the doctor doing the procedure. If the doctor had taken five minutes to tell me exactly what was going on and to address my concerns, everything would have gone much more smoothly. The fact that they send you back out into the waiting room to make a fairly important decision instead of giving you privacy and the fact that they expect you to sign a consent form without speaking to a doctor is inexcusable. Really, as soon as this all started happening, we should have just left. Left and rescheduled or left and decided against doing the procedure. It was not a life and death decision. There was no need to make the decision right now other than not wanting to have to go through this all over again.
What this whole experience has done (aside from convinced me that I never want to step foot in that clinic again) is reinforce my conviction about having a birth doula (which, it turns out, my insurance will pay for so there’s no reason not to). There really needs to be someone who is not emotionally involved to make sure that my rights as a patient are being respected. I still would like to have an ob do the delivery (although, if I wasn’t taking so many medications, I’d look into switching to a nurse midwife just to avoid ridiculous doctor and hospital mentalities that are so pervasive in the United States). But, I’m bringing along my own advocate.
*In which the following exchange happened:
Counselor: How familiar are you with genes and chromosomes?
Me: I have a PhD in cell biology.
Counselor: Ah, well, I guess I’ll just skip this next part, then.
**I should mention that mixed in with this mess was the fact that I’m currently taking a master’s class at a local university that meets 8 hours a day for three weeks and that I was already missing one day of class and I didn’t want to miss another.
***It was fairly uncomfortable and nerve-wracking to have the needle shoved into me, but not especially painful, though Dr. M did warn me that if the needle touched a nerve ending I could have pain in, “all kinds of unexpected places,” whatever the hell that was supposed to mean?