Category Archives: Uncategorized

A Step in the Right Direction

Update: If you’d like to read the specifics of my surgery and recovery, see this post. If you have questions, or would like to contact me privately, please email tac.questions@gmail.com.

Okay, I was waiting until everything was planned to really discuss this, but now that everything’s been arranged, I’ve had a hard time working myself up to it. I want to explain the next step we’re taking to make sure that what happened to Lucy won’t happen to any of our other babies in the future. I also want this post to be a source of information for any women out there looking for an idea of what they should do next, because I know it can be hard to find. So before I really start, let me say that I am clearly not a doctor, and this is just my attempt to assemble the relevant information I’ve been able to gather. I’m not going to cite sources, although I may come back in the future and do that. Also, this post is going to be LONG and discuss lady parts in great detail and with diagrams, so that’s just a warning.

Before I get to the nitty-gritty, though, let me just break it down really simply for those who don’t want to know the details. David and I have decided that we’re going to do everything in our power to prevent my stupid dysfunctional cervix from hurting any more of our babies. Neither of us thinks we could live through another experience like we had with Lucy. What I’m doing is flying to New Jersey to have a surgery that will essentially permanently prevent my cervix from dilating. Technically, it’s reversible, but it’s meant to be left in place, and it will mean that I will be required to have a cesarean delivery for any future pregnancy. Not only that, but due to certain risks, I’m not even supposed to labor, so the C-section will be scheduled a little early. That’s the basic idea, and I know it sounds extreme (especially for someone who always wanted a natural delivery), but read on if you want to know more.

If you don’t know me, and you got to this post while searching for information about incompetent cervix/cervical insufficiency, then you’ve probably experienced a loss (or losses) like we did. I’m so sorry. I know the pain you’re feeling, the confusion, the anger, and the frustration with your body. I’m so terribly sorry you’ve had to go through this. If you’re like so many of us, your doctors have told you that your loss was a fluke, or maybe they are pretty sure it was IC. My case was pretty clear, although many times it’s difficult to diagnose IC. Other things can cause preterm labor – infection, problems with the baby, problems with the placenta or cord, etc. So if you have any of those things, it’s hard to know: did one of those things cause labor, which then caused your cervix to dilate, or did your cervix dilate first, causing labor to begin? In my case, there was no infection, nothing wrong, just a 3 cm dilated cervix, bulging bag of waters, and contractions. Anyway, my point is that some doctors are reluctant to diagnose IC. My advice to you, if you’re not sure, is to get enough opinions about your case that you feel comfortable in your own mind that you know what happened to you. Sometimes you just can’t know, and no doctor will be able to help you. You’ll just have to do your research and follow your heart.

The day that my sweet Lucy was born, while she was very much alive down the hall in the NICU, two different OBs told me what we were going to do next time. That’s how they say it. They say “here’s what we’re going to do,” and it is inferred that it will work. People trust their doctors, and when their doctors give them one option, and tell them it will work, they mostly put their faith in them. Doctors are, in general, wonderful knowledgeable people, whom I respect greatly. But they’re also people, and I’ve always thought it was my job as a patient to make sure I was well-informed about any course of treatment. That’s what started me doing research about this, and I assume that’s why you’re reading this. What my doctors told me was that I had an incompetent cervix, and that during my next pregnancy, we’d do a prophylactic TVC (trans-vaginal cerclage) at 11 weeks and I’d have progesterone shots starting at about 16 weeks. My guess is that, if you’ve had a loss, you’ve heard something similar from your doctor. The problem is, that’s all they say. There is a lot more information that they don’t give you, and you really need to have all that information to make an informed decision.

So, now to the diagrams, as I try to explain my understanding of the available procedures. There are essentially three types*:

1) TVC – transvaginal cerclage

a) Shirodkar stitch
b) McDonald stitch

2) TVCIC – transvaginal cervico-isthmic cerclage
3) TAC – transabdominal cerclage

a) Traditional open approach (laparotomy)
b) Laparascopy (through 5 small holes usually)
c) Robotic laparascopy (via da Vinci robot)

*It’s important to note that different doctors (and doctors in different parts of the world) may call these procedures different things. For example, a traditional Shirodkar stitch is somewhat complicated and placed high on the cervix. However, most doctors performing “Shirodkar” cerclages these days are really doing some variation, a modified Shirodkar. Similarly, any cerclage placed through an incision in the abdomen is technically a TAC (transabdominal cerclage). However, some surgeons placing a “TAC” are actually doing a modified McDonald or Shirodkar stitch through the top of the cervix via an abdominal incision. This is NOT recommended and is more likely to cause damage to the cervix and uterus during a normal pregnancy and any contractions. Make sure your doctor explains the procedure he or she plans to perform.

You’ve probably seen this before, but this is what the female reproductive system looks like:

uterus
This image is from MedlinePlus.

However, I’m simplifying it. Please forgive my extremely crude diagram. The important part for this discussion is that part of the cervix lies above the vagina, connecting to the uterus at the internal os, and the rest protrudes into the vagina, ending at the external os. Normally, and during a normal pregnancy, the cervix is long and closed (during pregnancy, you develop a mucous plug that prevents bacteria from entering your uterus). During labor, the cervix thins and opens (effaces and dilates), allowing the baby to pass through.

basic

So, what happens in a TVC is the doctor goes in through the vagina, reaches as high as they can on the visible part of the cervix, and stitches around the flesh of the cervix, pulling it tight like a purse-string. There are two main stitches used, although there are variants on each: the Shirodkar and the McDonald.

TVC copy

This is the procedure that most doctors recommend. Sometimes they will wait and watch your cervix for signs of funneling (when it starts to open at the top) or shortening. If it begins to funnel or shorten, they will then do an emergency/salvage/rescue TVC. Other times, they will do a prophylactic cerclage late in the first trimester or early in the second, then monitor the situation. The stitch is usually done with a spinal in place for anesthesia. When the pregnant woman reaches term, the stitch is cut and removed, allowing a vaginal delivery.

A TVCIC is relatively uncommon, although possibly becoming more common. (My doctor had never heard of it and accused me of using “chat room lingo.” As I said, doctors don’t know everything.) A TVCIC is an attempt to place a band made of mersilene (a very tough woven polyester fiber – you want it to be 5 mm) as high on the cervix as possible, still accessing it through the vagina. This is done by making two small cuts in the lining of the vagina in front of and behind the cervix. Then the band is inserted through the cuts, then tied around the cervix as high as possible. A TVCIC is usually placed during pregnancy (unless it is intended to be permanent), and can be done under general anesthesia or spinal, I believe. I have read some studies that report that a TVCIC should be intended to be permanent, but at least one doctor I’ve spoken with does it a little differently. He leaves the knot inside the vagina (instead of tucked away above) so that it can be snipped and removed to allow a vaginal delivery.

TVCIC copy

A TAC is a full-blown abdominal surgery. The surgeon places the woman under general anesthesia (often, although in my case, since I was pregnant, my doctor felt it would be better for the baby if I was awake using just a spinal block) and makes a bikini cut at the bottom of the abdomen (just like in a C-section). They then carefully move the bladder (which is in the way of the cervix). Spacers are placed in the cervix to make sure the mersilene band is not fitted too tightly. (Edit: No spacers were used in my surgery. Dr. Davis told us that during pregnancy, the cervix is swollen, so he ties the band as tightly as possible. Then, after delivery, the swelling goes down and leaves a functional cervical canal.) The band is then tied around the very top of the cervix, just below the internal os. If it is placed correctly, there is enough room left for all normal functions of the cervix (enough room for semen, menstrual blood, even enough room to have a D&C if that is necessary). The band simply prevents the cervix from dilating beyond its normal state. The TAC is always meant to be permanent, and can be used through multiple pregnancies without being redone. Also, a TAC can be placed laparoscopically, either by hand or by DaVinci robot. Outcomes vary from doctor to doctor, but in general, laparoscopic TACs have had slightly worse outcomes. The surgeons with whom I’ve spoken feel that that is because it’s hard to see and feel the exact place and the correct tension in the band. I think the DaVinci robot, in skilled hands, improves outcomes, but it still hasn’t been as well-tested as the traditional open placement. I will be having a traditional TAC, but here is a very succint discussion of the laparoscopic approach: Prophylactic laparoscopic abdominal cerclage: Tips for success

TAC copy

So those are your three basic options.

TAC, TVC, TVCIC copy

Edit: Dr. Davis, my surgeon, drew a much better diagram and has given me permission to share it here:

Dr. D

Pros and Cons

I think it’s pretty obvious how I’ve come down on this issue, but let me just lay out some of the basics.

My doctors didn’t give me any statistics about the TVC, so I went searching on my own. Statistics vary of course, but what I found is that they have a 75-85% chance of success. Sounds pretty good, right? But there are a few problems. The first is that those numbers very possibly include a lot of women who never would have had a problem a second time. Say you lost a baby in the second trimester because you developed an infection. That infection could have been caused by an opening cervix, or it could have been a complete fluke. If it was a fluke, you may very well not have any problems in the future, but you may receive a TVC nonetheless. The second, and much bigger, problem is that success for a TVC means getting a woman to viability, or 24 weeks. That’s right, let that sink in. So basically, if you really do have an incompetent cervix, your doctors are aiming for 24 weeks (or more, obviously, but 24 weeks is a success, remember), and you have a 3-in-4 or a 4-in-5 chance of getting there. I am here to tell you, having a baby at 24 weeks is NOT a successful pregnancy. Lucy was born at 23 weeks, but her case would not have been substantially different if she’d made it to 24. A baby is not meant to be born at 24 weeks. In the very best case, you’re looking at months in the NICU with the very real possibility of cerebral palsy, vision problems, breathing problems, and developmental delays. But that’s the BEST case at 24 weeks. Viability is no guarantee. Even with all the amazing medicine happening in NICUs, a 24 week baby has less than a 50% chance of living.

Whew, gotta catch my breath. There are benefits to TVCs, of course. They are the least invasive option – one quick outpatient procedure, and you’re done. Also important is that they are easily removed for a vaginal delivery. They do have to be redone for each pregnancy, but no big deal there. Overall, the biggest benefit is that they’re not very invasive. See here to read about the different types of TVC, and to see the difference between the Shirodkar and McDonald stitches. Also see here.

There are other important cons to consider about a TVC, though. Due to their placement in the part of the cervix inside the vagina, some believe that they can have a wicking effect, actually causing ascending infections that endanger a pregnancy. Also, for how simple the procedure, TVCs require a lot of a woman afterward. For example, my doctors wanted to place my prophylactic TVC at 11 weeks. Thereafter, I was to be on complete bed rest. Yep, you read that right. Complete bed rest from 11 weeks until I have the baby. IF I were to make it full-term, that means 29 weeks in bed. That wreaks complete havoc on your body, and I’m not sure why doctors don’t take that into account. I’m already overweight and at higher risk for embolisms and blood clots, and bed rest makes that risk so much higher. So that is definitely something I considered. Complete bed rest isn’t good for anybody.

But I truly believe that I wouldn’t make it full term with a TVC. As I said, success is measured by getting to 24 weeks, and you have a 75-85% chance of that. But one study I read suggested that you actually only have a 20% chance of carrying to term. Those are not good odds. As far as I can tell, this is because the cerclage is too low on the cervix. This means that if you have IC, your cervix can still funnel open from the top to the stitch. That means the baby, the amniotic sac, the umbilical cord – whatever – can sink down into the cervix, putting pressure on the cerclage. This is a problem for two reasons: 1) it makes your cervix functionally shorter, so you are more likely to lose your mucous plug and get an infection, and 2) the pressure, an infection, or a problem with the baby (say an umbilical cord prolapse, where the cord is pushed out ahead of the baby) can cause you to go into labor anyway. Once you’re in labor, it either has to be stopped or you have to deliver. In many cases I’ve read about, women with TVCs went into labor early, their stitch was not removed quickly enough, and the baby was delivered through the stitch. If this happens, it is very likely to tear or otherwise damage the cervix, making it even less likely to work in the future. Also, I know of at least one instance where a baby was delivered through a stitch and suffered severe head trauma because of it. These are real worries. I can’t count how many women I’ve talked to who have had failed TVCs that resulted in the loss of a baby and usually some damage to their bodies. And according to one surgeon I talked to, if you have true IC, it’s not a matter of if your cervix will funnel to the stitch, but when it will funnel, regardless of bed rest.

Now, the TVCIC. This one is tricky, as it’s not often done. The goal with a TVCIC is to get the band as close to the level of a TAC as possible while still going through the vagina for minimum invasiveness. If I understand it correctly, though, it’s otherwise like a TAC and not a TVC, in that the band is placed around the cervix, rather than a stitch being placed through the flesh of the cervix. I spoke with one well-known surgeon who thinks the TVCIC is not really an option. He thinks it is impossible to get the band as high on the cervix as the TAC. This is important because, as I mentioned above, the cervix will still funnel as much as it can. Any funneling at all can cause problems, although the less, the better. He also pointed out that during a TVCIC, the surgeon goes in blind essentially, and there are important things going on in that area (like your urethra and big blood vessels). So you would definitely want to make sure you were in the hands of a very skilled and experienced surgeon. That criticism makes sense to me, but it would be much less of an ordeal if the procedure could be done through the vagina (rather than through the abdomen, like a TAC). It would also be fantastic if it could be removed for a vaginal delivery, although this would mean that it would have to be redone for each subsequent pregnancy. The critical surgeon I talked to did not think it should be removed, but I spoke to another well-known surgeon who has done the procedure very successfully and who does think it’s a valid option. According to the somewhat limited data available on TVCIC, women with proven IC were able to carry their babies to term with the TVCIC about 90% of the time. That is a much better figure than for TVCs.

We’ve opted to go with the traditional TAC. The surgery can be done either during pregnancy or before pregnancy (something neither my OB nor my RE – reproductive endocrinologist – were aware of). Some surgeons will only do it during pregnancy, but the most experienced surgeons in the country (both of whom I’ve talked to by email and by phone) prefer to do it pre-pregnancy if at all possible, because there is no risk to the baby (as there is no baby, of course), it requires a smaller incision, and the recovery is faster. However, some insurance companies will not cover it prior to pregnancy (ugh, the insurance is another issue entirely – some insurances will not cover a TAC unless you’ve had TWO or MORE failed TVCs, meaning you’ve lost at least two babies.) Anyway, when the TAC is performed prior to pregnancy, it does not interfere with any attempts to get pregnant, or with IUI or IVF. As far as I know, the surgeons say you can start trying to conceive as soon as you’ve had one period.

Pros:

  • It’s permanent, and you should never have to worry about your cervix opening up again (although you will anyway). It shouldn’t get in the way of anything else, so even when you’re done having kids, you shouldn’t have to worry about it.
  • No bed rest is required by the surgeons, although your particular case may warrant some degree of bed rest. They do recommend taking it easy.
  • No pelvic rest necessary, unlike a TVC, unless your situation warrants. Have as much sex as you want, or don’t.
  • Since the TAC is placed just at the cervico-isthmic junction just below the internal os, if it is placed correctly, your cervix can’t really funnel at all.
  • If you are prone to premature labor for reasons other than IC (as many women with IC are), the TAC improves your chances regardless by improving the functionality of your cervix.
  • Again, statistics vary, and some doctors are better than others. But with a well-placed TAC, you have a 95-98% chance of carrying to term. I like those odds.

Cons:

  • It’s definitely a surgery. It’s pretty straightforward as surgeries go, but it has all the same risks as any other abdominal surgery: adhesions, blood loss, mistakes, etc.
  • If you have the TAC while you’re pregnant, there is a small risk to the baby. The surgeons I’ve talked with haven’t really had any losses to speak of, but there is something like a 1-2% chance of loss. It’s hard to determine what might be caused by the surgery and what might have been a first trimester miscarriage anyway.
  • Longer recovery.
  • Required C-section. The cut is made through the same incision (unless you’ve had your TAC placed laparoscopically, in which case you’ll have several small incisions, and a new larger one for the C-section).
  • No labor/chance of uterine/cervical rupture. If you are allowed to labor hard for a long time, there is a chance that your uterus or cervix could rupture. Some might see the fact that you aren’t allowed to labor as a pro, I guess. This small risk is the reason they usually schedule the C-section a week or two early.
  • You may have issues getting your insurance to cover the procedure. I didn’t, but if your insurance isn’t that great, you might have to fight them for it.
  • The TAC can be placed incorrectly, in which case it could fail. Research your doctor carefully.
  • Not that many doctors do it, and your OB may very well not support your decision.
  • It’s not a 100% guarantee. Women have lost babies with TACs in place, either because they had a badly placed TAC or because they had some other, unrelated problem. If you do go into labor early with the TAC, and the labor can’t be stopped, you will probably have to have an emergency C-section to deliver.

I feel like I’m forgetting a lot of stuff, so I may come back and add more information, but I think I’ve hit the main points. I’m really not looking forward to having the surgery. I’ve had surgery a couple times before, and it’s no fun. But losing my little girl was the worst thing that’s ever happened to me, and I could not bear a repeat of that. I listed more cons than pros for the TAC, but it’s the 95-98% chance of carrying to term that outweighs all the cons for me.

Again, I’m not a doctor. If you’re considering these options, I advise you to do your own research. The important thing is that you feel comfortable about your decision and you know why you made it. Don’t let doctors push you into any particular course of action, because they get it wrong, and the stakes just aren’t as high for them. You have to be an advocate for yourself, your baby, and your family. If you’d like to learn more, or hear from the doctors doing the TAC, or talk to a lot of women who have suffered losses like this (and have or would like to have a TAC), I’d suggest you head over to Abbyloopers for more info.

Bringing Home A Rainbow

Bringing home a rainbow baby – a healthy baby after the previous loss of a child – is a joyful but difficult time for the parents. Rainbow mamas and papas deal with a lot in those first few weeks and months. I know this from personal experience, unfortunately. I lost my little girl, Lucy, after two months in the NICU. Less than 10 months later, we were bringing home her baby brother. It was beautiful and exciting and terrifying, as it is for all new parents, but some of that – especially the fear – was magnified. In addition, we were struggling to deal with our grief for Lucy and a lot of other complicated feelings. We felt guilt that Lucy never came home with us and wouldn’t get to grow up knowing how much we loved her, sorrow that our son would never know his sister the way we knew her, and terror that somehow we would forget her, OR that we would live so much in her memory that we would neglect William. None of it really makes sense, but these are some of the things that go through your head.

So what can you do to help the new parents of a rainbow baby?

You might have seen lists of ways to help new parents. Those are a really good place to start, because those all still apply to parents of a rainbow baby.

Schedule your visits. Don’t be early, don’t be late, and for Heaven’s sake, don’t just drop in. We’re trying to get the hang of things, learn the baby’s schedule, learn how to feed, and trying to get some sleep in wherever possible. We’d like to see you, but not while the baby is napping. And if your rainbow mama is like me and many other new moms, she might have her shirt off during much of the day while she and baby learn to nurse. Nobody wants to see that.

For now, keep visits short. We’re exhausted. This shouldn’t be surprising to anyone who has ever had children, but labor and delivery take a lot out of mom, and taking care of mom and baby takes a lot out of dad. And the chaotic mix of emotions accompanying the birth of a new baby after the loss of a baby would take a lot out of anyone. I spent a huge amount of time the first few weeks of William’s life a sobbing mess. I was happy, and sad, and relieved, and guilty, and a thousand other things. No matter how close we are, the only person I want to share that with is my husband. I enjoyed company, but I could only keep on my company face for so long at that point before I melted down.

Help us spend more time with our new baby. Those first few weeks of a baby’s life can never be repeated, and if I could, I would spend them just staring into my baby’s eyes. I would never ask for any help, but if you’d care to bring us an easy meal (in disposable pans and dishes!), that would be lovely. If you’re visiting, you might say “I’ll just do some dishes for you, if you don’t mind.” Don’t ask, because I’ll just say no. I might say no anyway, but I will definitely appreciate the offer. Same goes for other chores like mowing the lawn.

Do not come anywhere near me or my baby if you are sick, have been sick recently, or have been around sick people recently. I love you, really, but if you just came from your job as a kindergarten teacher and hopped the cross-town bus, I’d really rather you kept your germ-infested self at a distance. I know, that sounds incredibly harsh, but consider this: we’re heading into flu, whooping cough, and RSV season. Any of these can be devastating to a newborn. Any of them can potentially be deadly to a newborn, in fact. I am not about to risk another baby because I let somebody visit who shouldn’t have. And I don’t necessarily know your situation, so please think before you visit. I will 100% freak out if my new baby gets sick. You know why? Because my Lucy died from an infection. I don’t know if I could handle the stress of having another sick child right now. Please be understanding of this particular craziness.

Along the same lines, wash your hands when you visit. As I mentioned, this is the season for some bad infectious diseases, and they can be picked up almost anywhere. Washing hands is the number one best way to prevent their spread. Please don’t make me ask you to wash your hands, because I hate feeling like an obnoxious nag. I would love it if you would wash up as soon as you come in, and certainly before holding the baby. Please also avoid kissing the baby’s face. Their little immune systems are so delicate at this point, and like I said, I will lose it if my baby gets sick.

In general, respect boundaries. Every set of new parents will have different comfort levels, and the boundaries of rainbow parents might be different than you expect from new parents. They might have very strict guidelines for hospital visits. They might not want to be visited by young children for a while, or they may not want any visitors at all for the first couple of weeks. They may need more time to themselves to figure out how they work as a family. If they’re like me, they need time to figure out how to parent a living and a nonliving child, and to sort out their feelings for their new baby. They will very likely be more anxious than normal about the health and safety of the baby. Be patient with them. They are this way because they know the incredible pain of losing a child, and can’t bear the thought of it ever happening again.

Don’t be afraid to talk about the child or children who cannot be with their parents and siblings, and don’t be afraid of any tears that result from such talk. Say “Lucy would have been such a good big sister. I’m sure you’re missing her terribly right now. Know that I’m here for you.” I might very well cry, but I will be so grateful.

The most important thing you can do to help rainbow parents is to understand. Understand that they might be a little crazy about their baby’s safety. Understand that they might not want company all the time, and don’t take it personally. Understand if they get tears in their eyes as they smile at their baby. Understand that this baby, loved powerfully though it may be, can never take the place of the child who was lost. Rainbow babies don’t “fix” their parents’ sorrow at having lost a child, but they bring new joy. If the rainbow parents you know are anything like me, they want to share that joy with all their friends and family, just . . . carefully. Because we know how fragile life can be.

Picture 047