One Surprising Step Ahead

Today was my MFM consult. Some of it went as I’d have expected, other things were very different. Starting off, the first and biggest recommendation the perinatologist had was to get a pre-pregnancy transabdominal cerclage. With Dr. Haney. I wasn’t expecting that at all, but it turns out she had a patient with an identical history to mine. Lost twins due to pprom. Lost a singleton to IC. Did a TVC and kept culturing and treating the bacteria they found during pregnancy. . . . and still lost that pregnancy. So they sent her for a TAC, and she recently delivered a 39 week baby.

To say that recommendation was a pleasant shock is an understatement. While I was hospitalized and talking to another MFM in the group, he told me we’d place a TVC at 12 weeks during future pregnancies. I had pushed back, hard, on why you’d do a TVC, especially in someone with infection issues, and not TAC. He was adamant about the TVC being the right choice. So to hear the number one recommendation being a TAC, and to be told to go to Haney, that made me feel much, much better about my decision. It also means I'm one step ahead of the game, having already consulted with him and booked surgery.

On the subject of infection, this perinatologist, Dr. N, agreed with Dr. Haney that the underlying cause of both losses was cervical issues. Even though my cervix was long and closed after Zoe’s water broke. Even though Zoe was the higher baby, and bacteria should rupture the lower baby’s membranes first. She truly believes that there’s no scientific benefit or merit in looking for chronic endometritis, and that treating any bacteria found in my uterus that don’t belong there would cause other problems, as she saw in the patient previously mentioned. Having said all that, we pressed really hard and she agreed to request an endometrial biopsy and a consult with the true Infectious Diseases department. So, on 9/6, I go in for my SIS and a biopsy. Based on what those show, we’ll figure out what comes next.

Dr. N mentioned that infectious diseases would probably screen me for various autoimmune issues that interact with infections. With my history, that seemed wise.

On the topic of progesterone, she noted that it’s shown to help in cases of cervical shortening before 24 weeks, but with the TAC I will not have cervical shortening. Thus, she can not see any clinical benefit. At the same time, she’s willing to discuss further/prescribe it, if I get there, because there’s no harm either. The same goes for additional cervical monitoring during pregnancy. No need, but no harm, and there’s something to be said about the positive impact on my anxiety levels.

With respect to my Asherman’s, and my history of autoimmune disorders, that’s unlikely to be related to pPROM. I will have my placenta monitored more closely during future pregnancy to make sure there are no IUGR or placental insufficiency issues caused by the Asherman’s.

So, the plan:
1. During next cycle (which started when I walked out to the parking garage after the appointment) get endometrial biopsy and confirm uterine cavity is clear of scarring. At the moment I’m scheduled for a biopsy and SIS, but that may be replaced by a biopsy and hysteroscopy.
2. Consult with Infectious Diseases. Determine treatment based on biopsy and results.
3. Have TAC placed.
4. Return to CCRM for COH.

DH and I need to talk a bit more, but it’s a plan I feel pretty good about. It may not get us a THB, but I will feel confident that we’ve tried EVERYTHING we could in getting there.

Blocking the Exit

Earlier this month, we had a telephone meeting with a doctor who could probably be described as the expert in transabdominal cerclage. His name is Dr. Haney. Due to my cervical issues this pregnancy, we’re unwilling to consider trying again without a better option than a(nother) transvaginal cerclage. Dr. Haney, who is located in Chicago, appeared to be that better option. For the sake of my record keeping, I’m going to use this post as a place to track what we learned during our two hours on the phone with him.

The Consult

Here’s my best translation of what Dr. Haney told us. I’m not agreeing/disagreeing with anything, just trying to reproduce in my own words what I heard from him. Since this was filtered through my memory/lens, take it for what it’s worth!

The cervix is like a tube or a spindle: there’s tissue around an open canal. Of that tube, 2/3rds of it is up in the abdominal cavity, attached to the uterus, and the last third is down in the vagina. There is a band of tissue at the top of the cervix, the part in the abdomen, that remains tightly closed. During labor, the pressure of the baby’s head, plus contractions, is what forces that band to dilate. But outside of labor, it stays tight. That’s in a woman without cervical insufficiency (CI).

In a woman with CI, the entire column of the cervix dilates from the internal opening downward as the relatively small pressure from the growing baby presses down due to gravity’s impact. As the cervix dilates, bacteria can get into the uterus, and the membranes of the amniotic sac can tear free from the uterus and prolapse out into the cervical canal and vagina.

With a transvaginal cerclage (TVC), a stitch is placed in the lower third of the cervix. Women who have true CI and a TVC will funnel down to the stitch, because nothing has been done to prevent the upper 2/3rds of the cervix from dilating. This means membranes will pull away from the wall of the uterus, and bacteria from the vagina will be able to ascend to the uterus. If I understood Dr. Haney correctly, his position is that women with CI and a TVC will always wind up with chorioamnioitis because of this ascending bacteria. The chorio in turn worsens the chances of survival for their infants. Having had chorio with all three girls, and knowing that Alexis and Zoe passed before birth due to severe chorio, this was a painful reminder of everything that we’ve been through.

With a transabdominal cerclage (TAC), a 2-3 inch incision is opened at the bikini line. A woven fiber band is tied around the cervix at some point in the upper 2/3rds. In my case, Dr. Haney would place two bands. Each band has the strength to support 100-120 pounds, so they could easily support the weight of a fetus, placenta, amniotic fluid, etc. With the bands in place, dilation is impossible. They’re not tied so tight that the cervix is occluded, but they are tied tight enough that the membranes can’t ever prolapse and the cervix can’t funnel. The result of this is that the mucus plug stays in place, the cervix stays long (~4cm) and bacteria can’t ascend from the vagina. The other results: while one can have periods, first trimester miscarriages, and get pregnant “the old fashioned way,” one will have to have a c-section for any 2nd trimester delivery. There is also a risk of uterine rupture as the cervix can’t dilate if contractions occur, and something’s got to give.

Dr. Haney reported a 99% success rate, where success is defined as a live birth, and even mentioned that 92 of 92 sets of twins whose mothers he performed TACs on were born live. He noted that when babies are born before term with TAC in place, it’s due to other issues.

What are my feelings on all of this? 

I agree with the belief that TAC has much higher success rates than TVC, when you define success as live birth. There are numerous studies, most from outside the US, to support this. If we try again, I will have a pre-pregnancy TAC placed with Dr. Haney.  There is no question in my mind about that. Having said that, the “other issues” that cause pre-term deliveries are also very relevant to me, and I’m concerned they were minimized during our conversation. That’s probably because I was talking to someone who specializes in TACs and not the other issues, but I know exactly how this works: any complications I have during pregnancy post TAC my local MFM team will blame on the TAC. The TAC expert will simultaneously assure me it’s not due to the TAC and that I should work with my MFM team.  The end result will be suboptimal because everyone will be busy pointing fingers at everyone else. Cynical much? Why yes, I am.

Next steps

From my point of view, there are two issues that must be addressed before we decide to try for another pregnancy. First, infection. There’s a growing body of literature correlating first trimester miscarriages and failure of genetically normal embryos to “take” after IVF transfer with asymptomatic, chronic endometrial infection. Correlation isn’t causation, and there are plenty of women with term deliveries who also show these markers of infection (related note, I found a study showing a decent percentage of healthy pregnancies in the 36-38 week range have chorio, but no one ever looks for it because there’s no reason to).

Looking at my personal history, I had more than 15 years of recurrent UTIs. They started when I was a kid, a few times a year, and by early 2010, I got them every month or two. I would take my antibiotics each time, the symptoms would vanish, until the next trigger caused the infection to flare up again. In 2010 I was finally referred to urology. The urologist confirmed that there were no structural abnormalities, and then told me that in some people, the bacteria just hang around. The antibiotics knock them back enough to reduce symptoms, but as soon as conditions are right again, they go out of control. I was placed on 6 months of low dose macrobid, and had my last UTI in 2010. At least, my last until 2017. Long way of saying that I have a history of bacteria hanging on through antibiotics that should have cleared them. And bacteria that were asymptomatic until something triggered their uprising. Now I can’t help wondering if ‘pregnancy’ is what’s triggered uterine bacteria.

So, we must clear up the infection issue before we can make a decision to try again.

My cervix is the second issue. I think the TAC with Dr. Haney will address that. It comes at a high risk and a high physical cost, but it’s as good of an option as exists. Honestly, I’m grateful that there IS an option that works so well to solve one of my issues, even if the associated risks are great.

Overall, more answers, one potential solution, more risk and fear.

I Am So Incredibly Lucky

Since July 2nd, most of my thinking has been dominated by fear, pain, sadness, hope followed by the loss of hope, and more than a small dose of anger. With everything that has happened, it’s been really hard to see past those emotions, but I was reminded again today of how incredibly lucky I am in so many ways.

How do you lose three babies and still call yourself lucky? By having an amazing, amazing group of women looking out for you, that’s how. After my first loss, and the subsequent diagnoses of Asherman’s and DOR, I came across an amazing online community. I say amazing because of the women I “met” there. These are women who have been through their own hells and constantly support each other. Finding that community was one bit of luck. Getting to know and to celebrate successes of some members was another bit of luck. The fact that someone as cynical and snarky as me wasn’t immediately kicked out might be another bit of luck, but more likely it speaks to the compassion and awesomeness of those ladies.

That group, spearheaded by a woman who knows all too well the hell of a second tri loss, has stepped in again and again over the last few weeks to let DH and I know that our girls were loved. They’ve brightened our days and given us gifts to keep our minds occupied with happy things, when happy has felt distant. I truly can’t believe how lucky I am to know these ladies. I can’t even type this without crying, but I want to say to Robin and any of the TCF Family that’s reading this, thank you, from the bottom of my heart and DH’s as well. I will never be able to articulate how much your kindness means to us.

Is Hope Enough?

During the three weeks I spent in antenatal at the hospital, there was a weekly 'group' session for inpatient moms, facilitated by one of the social workers. I was fortunate enough to meet some great ladies, one of whom I'm still in contact with, and to whom I wish a very long, very boring stay.

The social worker asked us during one group session how things were going, that is, how were we feeling emotionally. How could we describe our stay? In my case, the answer was: terror, punctuated by hope. Honestly, every single time I had to get up to use the restroom there was fear. With my cervix open, I knew I could have a complete rupture at any time, and straining at all to use the toilet was likely to cause that. I also had several bleeding episodes when up to use the toilet, and those brought on sheer terror. Yet every time I felt Quinn move, every time her heartbeat was still perfect and my temperature was still normal, there was hope. Every morning that we woke up and got to add another day to the whiteboard with her gestational age, there was hope.

When we knew I was going to deliver, I tried to tell myself that at least I wouldn't have to live with the terror any more. That's the bright side of the worst happening, right: at least you don't have to be scared that the worst might happen anymore. For the record, that is an awfully shitty bright side.

To be fair, looking back at my entire pregnancy with Quinn, there was a lot of fear. The two weeks leading up to our first ultrasound were so rough that I started seeing a therapist who specializes in perinatal loss and infertility. The fear leading up to the NIPT results was bad as well. There was also a lot of joy. Feeling her move was so amazing. Looking forward to our lives with her was joyous. Loving her brought joy.

As I think about the future, and try to decide if this is the end of the road for us, this weighs on me. Can I survive the emotional roller coaster that is fertility treatments? Can I survive (hopefully) 9 months of fear? If we get pregnant again, I will have a cerclage of some type. If things went wrong again, could I live in the hospital with the kind of fear I had hanging over me, knowing the cerlage could rip out (TVC) or my uterus could rupture (TAC) and I could lose the baby? Basically, it comes down to a decision: is the hope worth everything that accompanies it: fear, potential heartbreak, potential loss, and all the surgeries, fertility treatments and costs associated to even have a chance at hope?  I don't know yet, the heartbreak and the fear are still too fresh.

Quinn Hope

On July 24, around 7 in the evening, we welcomed our precious little girl, Quinn Hope, to the world. Quinn was so amazingly strong, she stayed with us for about an hour before going to join her sisters. That hour, of holding her, feeling her move in my arms, and marveling at just how wonderful she was was the most important hour of my life. The end, and saying goodbye, was the hardest. 

Here is a photo of Quinn, with a small piece of the elephant blanket I tied for her while in the hospital. We kept that piece of her blanket with her. 




Earlier this summer we went up to the Boundary Waters to scatter some of Alexis and Zoe's ashes. We stayed at a B&B called the Blue Heron - the same B&B we were at when we were first pregnant with them. As we drove home from the hospital, and came around the lake closest to our house, there was a blue heron in the water. I've never seen one in "our" lake before. It gave me peace, that Alexis and Zoe were telling us they've got Quinn and will take care of her. The next morning, while sitting in my bedroom, I heard the call of a pair of loons passing by. When we were at the B&B, we saw two pairs of loons from the dining room window, and we heard their calls repeatedly. It's really unusual to have two pairs so close together, so it was an amazing sight. Once again, hearing that call at our home, so far from Ely, gave me a clear sense that our girls wanted us to know they are together. I will hang on to that. 


I love you Quinn. I love you Alexis and Zoe.