Dr. Stitches

I just got off the phone with the Dr. Miracle I talked about in my previous post, or Dr. Stitches, as Courtney calls him. We were on the phone for about an hour and 15 minutes...and holy cow, does that man talk a lot! But in a good, "I'm-really-passionate-about-what-I'm-telling-you" way, not a condescending "I'm-the-doctor-so-you'd-better-listen-to me" way.

We went over my history in more detail and he was more convinced than ever that I have incompetent cervix, and he's certain that when I talk to the doctors they'll agree. We (well, he) also talked about the types of cerclages in details, and why he believes that the only person who should ever have a TVC (transvaginal) is one who refuses to deliver via c-section and who is willing to risk the death or extreme prematurity of another baby. His mission is to replace all TVCs with TACs (transabdominal), as he believes they are safer and more effective by miles. We talked about the risks, the procedure itself, future pregnancies, and what the next steps would be if I decided to pursue this option.

Seriously, we talked for over an hour and it would be impossible to summarize it all here, so if you have any specific questions, leave them in the comments and I'll try to answer.

But I think it's obvious that I'm in love and would drive myself to Chicago tomorrow if I could.

Dr. Miracles?

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.

Life, as it happens.

Since having a huge, epic cry over finding out that our "friend" is having a boy, I've been doing pretty good. And I have to give a shout out to Chris (who doesn't read this, but I still feel the need to give props) for dealing with me that night. I know he didn't quite understand where I was coming from, but he just let me cry and held me, which is exactly what I needed. And in the morning, I felt better. I won't say I'm entirely at peace with the fact that they're having a son (and that she's blogging about "folding cute, little clothes for my son...my special little gift to come.") but I got most of the emotions out during TearFest July 2010 and have been feeling pretty great since then.

I've talked a little bit before about our plans for any future pregnancies and what we've been doing thus far. I would wear a dirty diaper on my head if it meant that I would have a take-home baby in the future. I'd accessorize with air fresheners and glitter, but damn straight I'd rock that diaper 24/7 if it'd help. Hence the supplements I'm taking, the acupuncture I have scheduled for next week (so excited), the tests I've brow beaten my OB into performing, etc. Anything I can do to achieve a healthy pregnancy and healthy baby, I'll be all over.

That being said, I don't really know that my OB is on the same page as I am. I love her - she's very nice, extremely competent, and also very unworried. She's confident that it was just a fluke and that I don't need to make any changes for the next pregnancy, especially after all the tests came back normal. She's probably right. But I can't shake the feeling that I need to be doing SOMETHING proactive next time.

So today I called the Maternal-Fetal Medicine department (MFM) and scheduled a consultation. After my water broke, I saw one of the MFM doctors and he had mentioned that while not necessary, I could be a candidate for MFM care next time. Since I haven't felt 100% comfortable with the lack of action plan for next time (other than a couple extra checkups/ultrasounds), I want to explore my other options for care should I get pregnant again. I am not hoping for miracles; I don't think they'll be able to give me answers as to why this happened; I don't think they have some magic test that hasn't already been performed. I am hoping that they'll be more understanding and offer me weekly or bi-weekly checkups and ultrasounds to keep my mind at ease; that they might be more aggressive with treatments (even if unnecessary...if it can't hurt, I want to do it); that they might be more willing to work with an admittedly bat-shit-crazy-paranoid woman (a title which I loathe, but is well-earned).

I told Chris the other day that I have this sinking feeling that our journey isn't over yet and that this will happen to us again...that there is something wrong with me that the HSG and RPL screen didn't pick up. I'm sure that's coming from a place of pure terror and is normal when when something this devastating occurs for seemingly no reason. But in the back of my head, I can't help but think we have to go through this one more time before we get our take home baby. I hope not. I really, really hope that's not the case. I know people who have gone through this more than once and it's so fucking unfair. But they made it through...and I know that if it does, I can too. That being said, please god no.

Where's that crystal ball when you need it??

Snake oil and quackery

I'm not a crunchy-granola hippie - I haven't checked my shampoo for phthalates; I eat lots of frozen foods chock full of unnatural preservatives; I love coating myself in chemicals to fake a tan; I got the flu shot; I plan to vaccinate my kids. But I was going to a midwife and planning a natural birth and I am open to the idea that modern science might not have all the answers; that you can't necessarily isolate one part of the body and diagnose it without looking at the rest of the body as well.

Today I went in for a consultation at a natural healing center, which was recommended by several people. I figured it couldn't hurt to see what they said about getting my body in balance and the best health it can possibly be in for the next baby.

During the consultation, I told the herbalist/healer/owner guy about my medical history (it's always so comfortable telling guys about your period, amiright? Or is that just me??) and about what I hoped to achieve...namely, a baby. Full-term. Alive.

He checked a pressure point in my ankle, my eyes, the pulse in both wrists, my ear, and my tongue. He said that my pulse is pretty sluggish and that I might be slightly anemic. He also diagnosed a food allergy by looking at my tongue - which one he can only guess at, but that he's confident that I have one. He also mentioned (based on a slightly inflammed pressure point and history) that I might have minor thyroid issues. He advised that I continue to take the supplements I currently am taking (Vitex, Pom juice, fish oil, Green Tea, acidophilus, prenatal) and added a fertility one and a tincture that he explained in detail, but I can't remember the details other than that he was adding something for digestive health and stress. I've had issues with dairy before, so he advised trying to cut that out for a week, then the last day adding it to all three meals to see how I feel. If that doesn't seem to be the allergy issue, I'll add it back in and cut out something else the next week.

In a month or two when we're actively trying to conceive, the supplements will change, and once I get pregnant, they'll change again. He said that he knows of several herbs and supplements that are thought to help strengthen the amniotic sac and can help prevent pPROM.

Whether any of that is backed up by actual medical science, I couldn't tell you. But I'd drink the urine of a unicorn if someone told me it'd help. So I'm giving it a month or so to see what happens - whether my cycles become more regular, if I feel like I have more energy, if I'm sleeping better - and if so, I'll continue it. I'll also likely add in acupuncture at some point. It certainly won't replace modern medicine, but I'm hoping that supplementing it with a more holistic approach will help. And if it doesn't do anything, then no harm done...right? RIGHT?!?

It's the final countdown!

When I wrote that title I had this song in my head. I feel like you should, too. So listen, and once it's firmly implanted, come back.

The doctor's visit on Friday was entirely uneventful. They reviewed the HSG results and the CT scan results and, based on the opinion of several different doctors, the test results were normal. It looked like there was a slight dip due to the positioning of the uterus, but after review they determined there was not. My uterus is tilted/retroverted fairly significantly.* That CAN cause problems if it's locked in that position, but during the exam she was able to move it, so that shouldn't have been an issue in my loss. A tilted uterus isn't considered a defect, per se - just a normal variant on the positioning, as something like 30% of females have it. So nothing in the scans came back abnormal, and all of the bloodwork came back negative (with the exception of hetero MTHFR, which again is fairly common - it happens in about 40% of the population - and also shouldn't have been an issue.).

The consensus? A terrible, horrible, no good, very bad, shitty piece of luck. A fluke. My doctor is confident it won't happen again - though, as we learned last week, that isn't a guarantee. All I can do is hope and pray it doesn't.

We're cleared again to start after two more cycles, and right now the plan is to do that. I can only hope that a) we get lucky and get pregnant again right away like we did with Caleb, and b) we get to take the next baby (and all subsequent ones!) home with us.

Fingers crossed!!!

*When this was originally started as a baby blog, I was planning on sharing this with my offspring so they could see how excited I was about meeting them. However, now there is 74% too much uterus talk for that to be feasible.

Testing, test, 123

I had the hysterosonogram Friday. It was...interesting.

It started out normal enough. They injected the dye, I felt a bit of cramping - but not nearly as much as I'd expected - and they brought the radiologist in to read the results.

I was watching on the screen, and even I could tell something was weird. The uterus filled with the contrast dye, but then it kind of "bloomed" around the uterus and didn't stay contained inside it. That not only freaked ME out a bit, but it freaked the radiologist out a bit. He was a resident, so he called someone else over to look. No one was sure what was going on. They were confident they hadn't punctured the uterine wall, because the dye was coming out from all over and not just one place (and the doctor didn't feel the wand push through any muscle). As they couldn't figure out exactly what was happening, they had me put a giant towel between my legs to keep the dye in (TMI) and took me to have a CT scan. It was just like on "House"!! I felt connected to Hugh Laurie and his fake American accent for just a moment.

After the CT scan, the nurse sent me home and said they'd be calling with a follow up. It was a rather abrupt end to what seemed to be something fairly significant, but we dutifully packed up and left.

Not even five minutes later I got a call from the doctor asking if I was still in the hospital. I KNEW that nurse was giving me the wrong instructions! Luckily the doctor understood and went over the results on the phone. The "blooming," they thought, was just an enlarged vascular system. The blood vessels around your uterus expand to provide extra blood to the area while you're pregnant, but normally should have gone down to regular size by this time (8 weeks after delivery). For some reason, they didn't. She mentioned the enlarged vessels could be a possible infection and or could be a possible sign of endometriosis, but didn't elaborate too much (she sounded more on the 'just-taking-longer-than-normal-but-no-big-deal' side of the spectrum). She put me on antibiotics for the next week to combat any possible infection just in case, however. She also mentioned that she noticed a slight dip in the top of the uterus. She talked to the RE about it, and he didn't think it was significant enough to worry about, but she said she might want to do an endoscopy (laparoscopy??) to investigate further since I did have a loss. She also ordered two more blood tests and I didn't catch what those were looking for, but I had a couple more vials of blood drawn and am waiting on the results.

Speaking of blood tests, the results of the blood tests I had last week (or whenever...the appointments are blending together) came back all negative, except for MTHFR. I do have one copy of the gene, which means it's heterozygous and shouldn't be an issues at all. It's when you have two copies (homozygous) that it becomes an issue. I will probably take extra folic acid during the next pregnancy just to be on the safe side, though.

So I'm still hanging out kind of in the middle of nowhere when it comes to testing and the test results, at least as far as the HSG is concerned. Hopefully at my follow-up on Friday I'll get some more information and a chance to ask all the questions that consulting with Dr. Google has brought up.

Around the corner

It's been a really good week. Being so confident in the upcoming tests has done amazing things for my emotional well-being. There are only two possible outcomes: they find something, or they don't. And I'll be thrilled with either one. If they find something, we can fix it. If they don't find anything, then it really was just a terrible fluke and chances are it won't happen again. At least it shouldn't. I made great strides with karma over the weekend by making a preschooler's LIFE by giving her a pack of glow sticks (which she continually called glue sticks, only adding to the adorableness). It wasn't perfect. I felt a few pangs of loss when playing with her 7-month-old brother, who is doing his part in keeping the cute baby tradition alive in their household with his easy smile and eight-mile-long eyelashes and giant blue eyes. Seeing his dad interact with him took me straight to how Chris would have been with Caleb. Carrying his car seat into the restaurant where I ate with his mom and dad was a physical reminder of what I should have had. Changing his diaper, pinching his toes, tickling his chubby legs...I should have had that. I want that. I hate that I don't have that. But knowing that the testing is being done gives me confidence that I will have that. It just won't be with my first baby boy, Caleb. Which is unfair. So flipping unfair. But I will have it with his little brothers and sisters. (However, despite this leap forward, I haven't made it so far as to unhide all my pregnant and new mom friends from Facebook. One thing at a time!)

But it was a very normal holiday weekend. I hung out with my family, I hung out with friends, I even got to hang out with my husband a bit! There was no crying. There was a lot of laughing. The raw open edges of my heart have worn away to a dull ache...always there, but not always causing pain. Normal. I can haz it.

Moving forward

I had my final follow-up appointment yesterday, and I couldn't stop smiling after it. Not because I learned anything new or got the go-ahead to try again, but because they agreed to do some fairly aggressive testing to see if they can find a cause for what happened to Caleb. It's a very, very sad state of affairs in the miscarriage/pregnancy loss world - while testing on the tissue of the baby or placenta is common, it usually ends there and they don't do any testing on you until you've had three losses. Three. Can you imagine asking people to go through this three times? I mean, mentally I get it - I really do. One loss, a fluke. Two losses, shitty bad luck. Three, a pattern. But try telling that to a mother who already suffered through one loss. "I'm sorry, but you might have to go through this emotional hell two more times before we're able to investigate and look for a cause!" Especially for someone like me, where the autopsy and pathology of Caleb and the placenta came back normal, that's asking a lot. My baby was perfect and there was no reason for him to die; therefore, there must be something wrong with me that caused it (so goes the internal logic).

So I am absolutely thrilled that my doctor is pursuing additional testing. Seriously, I couldn't stop smiling yesterday. I am getting two tests done: On is the RPL screen, which tests for clotting disorders and autoimmune diseases that might cause pregnancy loss. I don't expect any of them to come back positive, but just knowing for sure that they aren't a factor will be a huge weight off my mind - especially because if they are an issue, they're so easily treatable (i.e. extra folic acid and baby aspirin!). It'd be such a huge shame to go through this again and find that just two extra pills a day could have prevented another loss.

The second is a hysterosonogram, or hysterosalpingogram, or sonohysterogram, or HSG, or some variation of that. I'm sure there are technical differences between each of those, but the terms tend to be used interchangeably in everyday use. This test will insert dye or saline into my uterus to expand it and allow a detailed ultrasound to be performed, which will rule out any issues like fibroids, structural problems, or scarring [a similar procedure is used to check your tubes if you're suffering infertility, but mine will be for my uterus]. Again, I don't expect them to find anything, but the knowledge that my baby maker is physically fine and theoretically can carry a baby to term will make my next pregnancy...please god, let there be a next one...so much easier. I mean, I'm still going to be freaking out until the baby is delivered full-term and alive and STAYS that way for more than twenty minutes, but I won't have those lingering questions in the back of my mind wondering if there was something wrong with me.

So yay for the twelve vials of blood that got drawn on Wednesday! Yay for my HSG appointment next Friday! Yay for peace of mind!

Oh, and a confession: I almost hope they find something small and easily treatable wrong with me, so I have something to blame and more importantly, something to fix for next time.