My mind is just spinning. (This is going to be a long one; I apologize in advance. But when aren't they?? I write like I talk....a LOT.)
I have a friend who lost her twin boys at around the same time I lost Caleb. She had true incompetent cervix; she was 2cm dilated and her bag of waters was bulging out before she went into labor. Recently, she found her "Dr. Miracle" and has been having consults with him. She emailed me and told me that during their consult, he mentioned that he firmly believes nearly every case of mid-trimester loss can be linked back to one cause: incompetent cervix (IC), where your cervix either funnels or opens prematurely. To treat IC, most doctors will do something called a transvagincal cerclage (TVC). This puts a stitch at the bottom of your cervix to keep it closed. The problem with it is that because it's low in your cervix, your cervix can still funnel down to the stitch, creating a V shape that puts all the pressure from the bag of waters on one small point, so the chance for pPROM occurring again is present. To prevent this, a patient with a TVC usually goes on bedrest for the remainder of her pregnancy. It has about a 80% success rate. If all goes well, the stitch is removed once you've reached full term and you can deliver normally. Another way of treating IC is by placing a transabdominal cerclage (TAC). This puts the stitch at the top of your cervix and is 99% effective, and requires no bedrest. However, it's permanent and all future pregnancies must be delivered via C-section. Most doctors and insurance companies won't approve a transabdominal cerclage unless a transvaginal one has already failed.
For several reasons, I didn't think that IC was the cause for me, but at her urging I looked up his profile and emailed him. My email to him and his reply to me are below:
MY EMAIL
Hi, Dr. Haney!
I was given your name by several different people. I'm not sure if my situation is something that can be treated, or if it was truly a "fluke". My water broke at 18.5 weeks pregnant in April of this year and I went into labor at 19.5 weeks. Obviously the baby did not survive. One of your huge advocates, Txxxxx Mxxxx, said that you mentioned during her phone consult that almost all cases where the woman went into labor mid-trimester are cases of IC. I THINK I'm one of the rare cases where that wasn't the situation, and just wanted to hear your thoughts and be sure that I and my doctors are not missing something.
According to the last ultrasound I had, on 4/9 (my water broke on 4/7), my cervix was high and closed. They didn't do a vaginal ultrasound, though, and I'm not sure how accurate abdominal ultrasounds are for cervical length. When I did go into labor, I was a fingertip dilated and they had to give my Cytotec to allow me to deliver.
I have had a full RPL panel and an HSG and thus far none of the tests have come back abnormal. My doctor suspects placental abruption, but the pathology came back clear without any signs of that. I had spotting during the pregnancy and I know that blood can act as an irritant and therefore cause your water to break.
I'm assuming that because my cervix wasn't dilated when I went into labor and the last ultrasound showed a good cervix length that I didn't have IC, but just wanted to verify and ensure that we're looking at all possible angles.
Thanks!
Lara
HIS RESPONSE EMAIL
Dear Lara,
I am sorry to hear of your loss and am sure this was devastating for you. You history is virtually conclusive of an incompetent cervix. There is virtually no way you could have preterm labor or an abruption at 18.5 weeks. That is why your pathology revealed nothing as the problem is your cervix, not placental abnormalities. If your spotting occurred in the weeks prior to your loss, this likely represented the bleeding associated with cervical changes as is common at term when cervical changes precede labor. I can explain it better over the phone but the funneling of the cervix which is seen in IC is caused by inadequate support at the top of the cervix. As the membranes descend into the top of the cervix they contain the amniotic fluid and the hydrostatic pressure from the fluid pulled by gravity widens the “incompetent” cervix. As the membranes containing amniotic fluid continue downward and shorten the length of the cervical mucus column, vaginal bacteria come into contact with the membranes and the inflammation causes the rupture of your membranes. Since the dilating force is related to the descent of your amniotic fluid-filled membranes, once your membranes rupture and the fluid is lost, your cervix no longer has this hydrostatic wedge and the cervix will temporarily appear normal by ultrasound because of its elasticity. To detect funneling, you would have to have had your ultrasound prior to the rupture of your membranes.
Quite simply, this was no fluke as membranes don’t rupture with a normal cervix. Unfortunately, my experience tells me that you have IC and will undoubtedly repeat this clinical course with subsequent pregnancies. I can appreciate that this may be a bit confusing so I would recommend that we talk on the phone so you can ask all your questions and get a clear understanding and make a decision you are comfortable with.
You can arrange that by contacting my assistant, Ms. Exxx Fxxxxxxx, at 773-xxx-xxxx. I look forward to speaking with you. Good luck.
A.F. Haney
Needless to say, this shocked me. It was absolutely not the answer I expected. My mind went a million places.
This was never even mentioned as a possibility by my OB. Is this a cutting-edge study? Is it something that most doctors have considered and dismissed? Is this one of those beliefs that have doctors split?
Could it be a scam? Honestly, one of the first thoughts I had was, "Yeah, but isn't he going to say that to everyone? Is he preying on bereaved parents who would do anything to have a living baby to get them to do this super expensive procedure?" Would a doctor really be a scam artist? I don't know enough about the medical field to know, but we're conditioned to respect doctors and trust their opinions.
His profile looks respectable, though, and his explanation makes complete logical sense to me. I don't see how it can "just happen" - doesn't there have to be a cause for everything?
I'll take this email and whatever information I get from him during my phone consult (scheduled for Friday) and present it at my MFM appointment and see what they say. If the MFMs don't agree, then do I go against their advice and look into it anyway? Do I get a third...or fourth...or fifth opinion until I find someone else who agrees with Dr. Haney? What if the MFMs are on the fence about it? What if they say it's not the cause at all? How would I even pursue Dr. Haney's ideas without offending my local team of doctors?
And I hate to say it, because I would do absolutely anything for a live baby (see: wearing diapers on my head), but I would be disappointed that I'd lose my chance for a natural, unmediated delivery if I had to have a TAC. Obviously I would come to terms with it, but it'd be yet another thing to mourn the loss of (along with Caleb, my innocence, my naivety, the excitement for another pregnancy, the ability to say "when" instead of "if" when talking about the future...). It's the least of my concerns, but since I'm being so honest here, it was another thought I had. "Oh...there goes my hippie, soothing, moving around, unmedicated, natural birth plan!"
So. many. questions!!
I hate that the world of maternal fetal medicine (and even regular OBs and RE and all that) isn't conclusive and that there are so many differing opinions. It's up to each of us to find the theory/doctor/practice that we believe is most correct, and if we choose wrong....we could end up with another dead baby.
You have a great grasp and I love how clearly you explained it!!! I'm so glad you're getting more possibilities to mull over, whatever your final choice will be. Dr. H's philosophy is that he wants to rid the world of the TVC, and yes, the TAC is kinda cutting-edge. It's not performed widely, but it has been around for a long time. I'll be bugging you Friday after your call to see how it went. He's so compassionate and kind, you will love him. ((HUGS))- Trisha -
ReplyDeleteOh wow. I hope your phone consultation goes well.! Even though his response wasn't what you were expecting, it sounds like it may have put you one step closer to finding an answer, and ultimately placing a healthy, beautiful baby in your arms. I will definitely be thinking about you on friday and will be looking forward to hearing how the conversation went :)
ReplyDeleteOh. My. God. You've just given me something else to ask my doctor about, when or if I ever get pregnant again. I can only imagine how hard it would be getting that e-mail. Good luck with the consult. I'll be interested to hear what he has to say.
ReplyDeleteHe sounds very knowledgeable. Good luck with the consult and I hope everything goes well!
ReplyDeleteI went to my MFM and told him about how I wanted to get this. I told myself before I went in there that if he wasn't on the same page as I was, I was going to walk out and get another opinion. I just cannot go through another loss. No way. He told me that he thinks the TAC is an excellent idea. As you can see on my blog, he called it "bulletproof", I told him that i want that!
ReplyDeleteYou will love the man. He really is intelligent and is totally there to help. I didn't get the feeling of him trying to prey on us who have lost babies.
I recommend writing down your questions that you have so that when you have your phone consult with him, you will have them all ready.
Wishing you all the best!
*hugs*
Good luck with your consultation!
ReplyDeleteHey girl! Whew- I just had the chance to really look through your blog site, and it just ripped my heart out! I hope that this new doctor works out for the best, and your phone consult goes well! I know what you mean about trying to figure out the right doctor! We are also in the middle of deciding if we should switch RE's or not! So many decisions!
ReplyDelete((hugs))
Christina
curseofthechewedbuddah.blogspot.com
umm...whoops that would be curseofthechewedbuddha.blogspot.com
ReplyDeleteHe does sound very knowledgeable about this. Thank goodness you found this doctor! I really hope you can get more questions answered this Friday. I will be thinking of you on Friday.
ReplyDeleteI think he knows what he's talking about, but I think there's still no way to know about your situation. I had a similar experience, but my doctor specifically sent me to the hospital to check if I had incompetent cervix, two ultrasounds in the week before my water broke. Both showed me as having a long, even longer than average cervix, and my doctor seems convinced that an infection caused the membrane rupture. Good luck with your consult!
ReplyDeleteI have been reading alot about the TAC too, and I've been on the abbyloopers yahoo group for a few weeks listening to their stories. I think Dr. H is the real deal. It sounds as if even among MFM docs there is differing opinion about the procedure and I'm in a similar stage as you are in the investigation so I look forward to following your journey.
ReplyDelete