Suspect #1:Thrombophilia

Now, on to the main issue of what causes umbilical cord-related (stricture, torsion, hypercoiling) deaths to occur. Let's take a look at suspect #1: Thrombophilia.

What is thrombophilia?

Thrombophilia is a group of disorders (can be inherited or acquired) that cause an increased tendency to form blood clots. This can cause serious problems such as heart attacks, strokes, deep vein thrombosis, pulmonary embolism, and pregnancy loss or complications. Read more about it here:

Thrombophilia and why it's dangerous during pregnancy
Information on screening and treatment

There are many studies showing improved pregnancy outcomes in women with thrombophilia who are treated with the anticoagulant heparin. You can find a good study on it here, as well as many other good references.

There is very little research on the effect of heparin treatment in women with a history of pregnancy loss of unknown etiology. See here and here .

And I can find absolutely no research about heparin treatment in women with a history of umbilical-cord related losses. Also, I can find no correlation between thrombophilia and cord pathology. Articles about thrombophilia mention placental abruption, intrauterine growth retardation (IUGR), preeclampsia, and clots in the placenta, but never umbilical cord abnormalities. Articles about umbilical cord abnormalities never mention a correlation with thrombophilia. Why then is heparin prescribed for women with recurrent cord-related losses? My guess is that doctors and patients are desperate to do SOMETHING and in absence of any research to support or refute a thrombophilia connection, just figure heparin is worth a gamble.

Disclaimer

Before I go any further, here's a two-part disclaimer.

First, I am not a doctor and in fact studied only as much science as was required to get my business degree. I try to get medical information only from credible sources, but don't make the mistake of considering me personally a credible source. I'm convinced, however, that I know just as much or more than most doctors about the subject at hand - umbilical cord pathology. Don't be too impressed by that statement, though, because I've found most doctors have little or no useful knowledge and just say these problems are "bad luck".

Secondly, although I will do my best to make this blog organized and clear, I am working with a brain that is neither of those things. Depression and anxiety have made me very forgetful, disorganized, distracted, and really stressed out. Infertility treatment only makes it all worse.

More Bad News. Is There Any Other Kind?

I had hoped to start a new cycle on medication today, but instead got more bad news. The ultrasound showed a pretty big cyst on my only ovary. It's not a huge shock, since I've been having pain for the last few weeks. Looks like I'll have to be on the pill for awhile in hopes of having a clean ultrasound next time.

This is exactly the situation that happened last April. We had finally gotten up the courage to try again for a pregnancy, but I got a cyst and had to go on the pill. Being on the pill while wanting desperately to get pregnant is just adding depression on top of scary severe depression. And it really doesn't help the situation that my already messed up hormones are constantly being manipulated with all kinds of drugs.

The Circus We're In

Much to my surprise and joy, I had gotten pregnant easily with all four of my babies. I got pregnant on the first try the last three times, which is remarkable for anyone, especially someone with my history of endometriosis, cysts, and surgery. But last November, after it became apparent our luck had run out, we were referred to an infertility clinic.

The infertility may be the result of messed up hormones - starting in late 2007 I started having 2-day periods, no LH surge detected with ovulation predictor kits (though my temp still rose mid-cycle like always - go figure), and functional ovarian cysts (but only one at a time - not PCOS). I doubt the January 2008 laparoscopic surgery has helped matters either. I had the surgery in hopes of finding some answer about what caused out babies to die. I ended up losing my right tube, which was badly damaged and almost certainly useless for reproductive purposes, and had varicose veins as a result of being stretched around a 10" peritubal cyst I had removed in 2001. I also lost my right ovary due to an endometrioma. Since then, I don't have the dull pain in my right side that has plagued me for years, but instead I am infertile. Not a good trade-off. This had made our whole ordeal so much harder.

So for the past few months, my life has been scheduled around doctor appointments. The current protocol includes Clomid, an HCG trigger shot, IUI, and progesterone thereafter until we get the pregnancy test results. Pills, shots, and suppositories - oh my! We're going at this from all angles.

In February, after cycle #1, I was shocked to get a phone call from the clinic on Friday the 13th saying that the pregnancy test was positive! It was especially shocking because I'd been having bad endometriosis pain for several days. I had pregnancy symptoms for a few days, but by Monday they were gone and a blood test showed my hormone levels weren't rising.

Although there will be no cradle this time, it is a relief that there will also be no grave. A miscarriage at 5 weeks is a completely different experience from a loss in the 5th month. It took a long time and some help to even get pregnant this time, and the loss was merely devastating rather than traumatic like the last two. Now we know pregnancy is still possible, which might be a good thing.

A Brief History

Updated November 2015:

Surgery #1 (October 2001): Just six weeks before my wedding, a large mass was discovered.  Laparoscopy to remove a 10" paratubal cyst (benign serous cystadenoma).  Nothing's been the same since!

Pregnancy #1: David born April 2003 at 39 weeks

• First noticed slightly lagging growth at 20 week ultrasound; more serious by 30 weeks
• IUGR (5 pounds even at term) APGAR scores 2 / 7
• Meconium and Nuchal cord x1
• We were told he had a "thin cord" and "small placenta", but it was not sent to the lab
• 5 days in NICU
• Has heart murmur, which we're told is "innocent" (not problematic)

Pregnancy #2: Tania born March 2005 at 39 weeks

• 6 pounds 3 oz. APGAR scores 9 / 9
• We were told the placenta appeared to have "two sacs", but it was not sent to the lab
• Diagnosed with hole in heart (atria) @ 3 weeks; resolved on its own by 3 years

Pregnancy #3: Jeremiah lost January 2007 at 21 weeks

• Normal chromosomes (except a pericentric inversion of chromosome 9 [inv(9)(p12q13)] inherited from mom - we're told this is insignificant
• Pathology report notes the cord was hypercoiled
• All labs on mom normal, except "moderate positive" result on anticardiolipin antibody IgG, which we're told is not significant; after six weeks this was retested and the level was "inconclusive"

Pregnancy #4: Miles lost July 2007 at 19 weeks

• Normal chromosomes
• I took baby aspirin from 6 weeks onward
• All labs normal, including anticardiolipin
• There had been a fetal-maternal bleed (2.5 cc) and the amniotic fluid was brown with old blood
• Cord showed stricture in mid-umbilical cord; we noticed after he was delivered that there were also a couple of less dramatic areas of narrowing
• Additional testing on me showed I am heterozygous for MTHFT mutation C677T, which we're told is "not clinically significant"

Surgery #2 (January 2008): Exploratory laparoscopy. I lost my right tube (had been badly damaged by previous 10" cyst) and right ovary, though I think it should have been saved as it only had a small endometrioma. I ended up in the emergency room six days post-surgery for a hematoma.  I'll spare you the gross picture.  You're welcome. After recovering from surgery, we started trying to conceive again only to find that I'm now infertile.


Pregnancy #5: Miscarried February 2009 at 5 weeks
This time conceived on first cycle of Clomid and IUI (We had no trouble getting pregnant the first four times)

April 2009 - Cycle 2 with Clomid/IUI = Negative
May through July - on the Pill because of large painful cyst!
August 2009 - Cycle 3 with Clomid/IUI = Negative
September 2009 - Cycle 4 with Clomid/IUI = Negative
October through December - on the Pill because of large painful cyst!
January 2010 - Cycle 1 with Follistim/IUI = Negative
February 2010 - Cycle 2 with Follistim/IUI = Negative
March 2010 - Cycle 3 with Follistim/IUI = Negative
April to July 2010 - on the Pill because of a small stubborn cyst and planning IVF
July/August 2010 - IVF #1: 12 eggs retrieved, 6 mature, 4 fertilized, 2 transferred on Day 3 (8 cell and 5 cell), none to freeze - Negative
September to November 2010 - on The Pill because at least one endometrioma has developed ; IVF #2 delayed
November 2010 - IVF #2: 11 eggs retrieved, 4 mature, 3 fertilized, 2 transferred on Day 5 (1 blastocyst, 1 morula), none to freeze - Positive!

Pregnancy #6:  Anastasia born August 2011 at 40 weeks!!
        Cord and placenta look normal; Apgars 9/9; she's perfect!


Epilogue!

Pregnancy #7:  In March 2015, I was shocked and terrified to find that I've gotten pregnant naturally.  After reliving the terror that is high-risk pregnancy, I had a healthy girl at term.  We found out only after she was born that she had cord stricture as well.

2015-present: We are DONE with this whole business!  Q got a vasectomy.  The kids are all healthy and growing well.  Since getting pregnant in 2010, I've been 95% free of the endometriosis pain I'd endured for a decade ... a wonderful and unexpected bonus!