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Sunday, March 19, 2017

Rainbows and Recurrent Pregnancy Loss

I've written this blog in my head so many times over the last three years, but if I ever actually post it, it's only because our rainbow has finally arrived after a long storm.  For those not familiar with the language used in support circles for women who have lost babies and pregnancies, a Rainbow Baby is a baby born after the loss of a previous pregnancy.

Grateful doesn't begin to describe the emotion we feel to finally be able to welcome our rainbow baby into our family.  After the birth of our first son, we lost six babies at various stages of pregnancy and in celebrating the birth of our rainbow baby, I also have a strong desire to acknowledge more publicly the angels that came and went before him and paint a picture about why we chose not to make any grand announcements over the course of this pregnancy.

I also feel compelled to offer a small sliver of hope to the other women, like me, who in the darkest storms of recurring loss, desperately scoured the web for stories that would give them a little light to hang on to - a reason to keep hoping through every new round of bloodwork, every terrifying positive pregnancy test, and every heartbreaking ultrasound or visit to the ER.

Many of our friends and family didn't know that this was my eighth pregnancy in 3 years.  Pregnancy is not a happy, glowing time for me.  A positive pregnancy test does not mean I get a baby at the end of 40 weeks.  A positive pregnancy test is filled with our hopes, dreams, anxieties, and fears all in one very delicate package.  For me, there is no "safe zone" when the risk of loss is reduced in pregnancy.

It's not that I was ashamed of any of my losses. I knew there was no shame in what was happening and I had known enough people who had experienced a miscarriage to know that it was a deeply painful, personal, and an unfortunately common experience.  Still, keeping my pregnancies and losses private was the easiest way for me to save myself from having to relive my pain and from having to hear well-intentioned but not very helpful advice, or awkward attempts at words of comfort.  It was the easiest way for me to get through it while I recovered and tried to move forward.

Although information about miscarriage is readily available and has been receiving a lot of very important attention in an effort to eliminate any taboo associated with miscarriage, recurrent pregnancy loss (RPL) is much less frequently discussed and often even professionals aren't sure what to make of it.

My first pregnancy came easily and was a relative breeze with few complications. When my husband and I were ready to grow our family again, pregnancy came easily, but it didn't stick.  After my first two losses, I was a little confused and definitely heartbroken, but hopeful and confident enough to pick up and try again.  I was told by my doctors that early losses happen all the time and that many women don't ever know they are experiencing miscarriage, believing it to only be a very late period.

After my third loss, I read the book Coming To Term in one sitting and resolved to figure out what was going on with me. The next day, I requested testing. The standard lineup for RPL testing includes CBC, Liver Function Tests, Renal Testing, Thyroid function, Glycemic testing, Autoantibodies, ANA/ANF and dsDNA Anticardiolipin antibodies – IgG IgM, Thrombophilia Screen, Chromosone Karyotyping (for both the Husband and I) Antithrombin III, Protein C, APC resistance, Protein S, and a litany of physical exams to rule out physical reproductive system anomalies.  Results came back with nothing very significant with regard to miscarriage - I had a barely positive ANA and discovered a heterozygous C677T MTHFR gene mutation, so I was sent to a Rheumatologist to explore the ANA issue and an Internist who had special training with MTHFR mutations.   I also started acupuncture - just to cover all my bases.

My Internist also ran a separate panel of tests and although my thyroid screens were all normal, noticed that my thyroid looked slightly enlarged and sent me off for a thyroid scan.  She also told me to start taking a daily aspirin and a methylated folate for my MTHFR.  Scans showed a tiny nodule on my thyroid - too small for a biopsy - but I still have to return for annual scans.  The panel of tests revealed some notable vitamin deficiencies, so I added a massive amount of supplements to my regimen and had to return for blood testing every 3 months to track improvement.

The Rheumatologist ran three more rounds of tests. My ANA wasn't a positive anymore, I was not showing any signs of autoimmune or rheumatic disease, but in her panel of testing she had one lab show up barely positive for Sjögren's Syndrome (I had to do my testing at two separate labs since apparently various labs have different criteria for positive and negative results) while the other lab showed I was negative.  Sjögren's Syndrome wouldn't have been the cause for my losses, but if I were to get pregnant again, it's something that required extra monitoring and ultrasounds.

I used to have anxiety about needles and blood draws.  Now I don't even flinch.

Around that time, I discovered I was pregnant again.  We saw the baby's heartbeat on an early ultrasound and were thrilled to think that our RPL nightmare was over.  Not long after, we found ourselves in the ER because my then 14 month old son had experienced anaphylaxis and we were entering the nightmare of life-threatening food allergies.  I remember sitting in the ER with my son on my chest trying to remind myself to stay calm for him and for the baby.  Reminding myself that stress is not healthy for the baby.

We made it out of the first trimester with the help of progesterone and aspirin, but otherwise without a hitch.  My anxiety was through the roof the entire time and we had extra ultrasounds to make sure everything was OK before making a big announcement to our families at Christmas.  The Monday after Christmas, we went in for a routine visit and ultrasound.  The ultrasound tech started the scan and froze - she said she needed to stop and get the doctor.

The Husband and I were confused, the baby's heart was clearly beating, so what else could possibly be an issue? The baby's bladder was enlarged and we needed to be seen by a Maternal Fetal Medicine (MFM) specialist immediately.  We were in the MFM's office within an hour, scanned again and told that the prognosis was not good.  The baby had one of two possible conditions that were likely incompatible with life considering the severity of the defect they saw on the ultrasound:  Megacystis microcolon intestinal hypoperistalsis syndrome (MMIHS), or Fetal posterior urethral valves (PUV).

The MFM also told us that in his experience termination was the only option.  We explained that was not an option for us and he added that there was another MFM within a reasonable driving distance who might be willing to attempt treating these conditions in utero with the hopes of having a baby born who would need corrective surgery at birth and likely lifelong medical care. The MFM had us meet with a genetic counselor who explained our options again and gave us more information about Perinatal Hospice and Palliative Care. We then made an appointment with the other MFM.

What followed was confirmation of our baby's poor prognosis, a genetic test that indicated elevated risk of Trisomy 18, a set of bladder drain procedures, an "inconclusive" amniocentisis, and ultimately a premature rupture of membranes (PROM) that had me on bed rest for a few weeks hoping that the membranes would heal and amniotic fluid levels would return to normal.  We were told that our baby no longer had a heartbeat at 17 weeks and because the baby was too big for the standard D and C procedure, we would have to consider either a D and E or a delivery.  After a few days of careful consideration, I called up my OBGYN and asked to be set up for delivery.

To be honest, that delivery and our time in the hospital was perhaps the least traumatizing and most healing part of that entire pregnancy.  I had no idea that our hospital had specific training for the staff in labor and delivery to deal with pregnancy loss and stillbirth.  They were incredibly sensitive and they never referred to the baby as anything but our daughter or our baby.  They brought in a tiny pink hat and blanket for her and printed out a hospital band for her and made us a certificate with her name and the date of delivery.  They left us in the room with her to take photos and hold her and admire her perfect tiny fingers and toes. They sent us home with booklets for support and a book to explain to our son what had happened.  We left the hospital heartbroken, but feeling well cared for and loved by people we had never met before.  We had her remains cremated and placed in a tiny pink urn.

I sort of lost my mind a little bit after that.  I was walking around apparently functioning like a normal human, but I was pretty sure I was not an actual human.  This loss combined with the reality of my son's recent life-threatening food allergy diagnosis convinced me that not only was I never going to have another child, but the child I did have was surely going to die from anaphylaxis and I would no longer be a mother. I sobbed to my priest and confessed my anger about how it was impossible for me to understand what the point of anything was anymore. I remember talking to my OB about all this, telling her that I was actually OK now, and smiling about it all while tears rolled down my face for some reason I couldn't explain.  She prescribed a low dose of sertraline and said I needed to come in for more follow ups.  Time - and perhaps more importantly, that God-sent little blue pill - slowly lifted the fog for me and while I am forever changed and still get triggered by certain things, my feelings are mostly back to normal.

I started having heart palpitations after that, so I was now seeing a cardiologist regularly along with my rheumatologist, and the internist - making me the youngest person in almost all of those doctor's office waiting rooms - and meaning I had at least one doctor's appointment every 2-3 weeks. I had a lot of doctors trying to figure things out and still nothing that definitely explained why we had lost so many pregnancies after an uncomplicated first pregnancy.

Ten months later, we were pregnant again. We saw a strong heartbeat on two different early ultrasounds - I was being seen at extra appointments and things were going great.  My hopes climbed and I was getting excited about our baby being born a mere month after my brother's first baby would be due.  At 10 weeks, on Christmas Day, I started spotting and ended up in the ER to confirm what I had feared.  Pregnancy loss number 6.  Because it was a holiday weekend and nothing could be scheduled until Monday, I miscarried at home naturally.

We were then referred to a Reproductive Endocrinologist (RE) for even more testing.  She ran a new panel of bloodwork and set me up for tests to check the physical condition of all my reproductive organs.  She did discover, however, that I had a rapidly growing uterine polyp that appeared over the course of my treatment with her, so I was set up for surgery to remove it and have it tested.  Once in surgery she discovered it was larger than expected, and had grown to cover one of my fallopian tubes, but thankfully was not cancerous or cause for other concern.   In her book, I was pretty much in tip-top shape for pregnancy and everything was normal, so no real answers - she said it was probably just bad luck.  She sent us off without much additional instruction, only to say we could start trying again in 3 months and to call her the minute we got a positive pregnancy test.

We waited a little longer than 3 months to recover emotionally and physically, but by the end of July we had a positive test and were started on the progesterone and aspirin regimen, as well as weekly ultrasounds and bloodwork.  Things got off to a rocky start and I was on bedrest for a few weeks thanks to a subchorionic hemorrhage but it eventually resolved and I was back on my feet.

At one point I was at the office and I had some very faint spotting that was similar to how my last miscarriage on Christmas Day had begun.  I got in my car to drive to an appointment (sure that I was losing this pregnancy as well) and got stuck in traffic behind a white Prius with a vanity plate that read "BIRTH."  I thought the universe was playing some sick joke on me and I sobbed all the way to my appointment.  Maybe the universe was actually sending me a sign to not lose hope yet.

I resolved to simply be grateful for every moment I knew the life growing inside of me.  Every time I wasn't spotting, I would say thank you.  Every time I felt like I was going to vomit and couldn't get out of bed, I'd say thank you.  Every time we had an ultrasound and the baby was still there, I'd say thank you.  It got me through day to day and even though I couldn't bring myself to plan ahead, read pregnancy books, start preparing, or look at baby clothes and think of baby names, I was thankful for being pregnant just one day at a time. Not being hopeful about pregnancy had never prevented any of my losses, so I was hopeful one moment at a time.

I had weekly appointments and ultrasounds with my RE until I hit 13 weeks.  I then "graduated" to a MFM for bi-weekly ultrasounds while I continued to see my regular OB for the usual appointments. I started weekly physical therapy for debilitating sciatic joint pain and adductor strain brought on by pregnancy (which I was also thankful for - even if my hips decided to drift in opposite directions thanks to pregnancy hormones.) And after what seemed like an eternity, we found ourselves in the third trimester, and finally in the realm of having a baby that would come to term.

To have hit 24 weeks and have a 50% chance of viability seemed like a dream come true. To be worrying about my pregnancy induced hypertension (PIH) at 35 weeks felt like an incredible blessing.  To be scheduled for induction at 39 weeks was like winning a jackpot.  I was officially pregnant longer than I had ever been before - including my son (I was induced and delivered at 37 weeks with him, also for PIH) and although the daily regimen of supplements and aspirin, blood pressure checking, 3x a week appointments, and anxiety over kick counts was exhausting - it's the best kind of exhausting and it's hard to complain about it.  I'm even grateful for every pain of labor and even the hell of a magnesium drip after his delivery.

I still don't know why we lost 6 pregnancies and I'm not sure I ever will.  The sad fact is that when it comes to recurrent pregnancy loss, the majority of couples will never have an explanation and no tools to attempt to prevent it from happening again.  For most of our pregnancies, we weren't specifically trying to get pregnant, but it didn't change the fact that we wanted every one of those babies and that they were so desperately loved.

I did everything I could, but there was no one treatment, no single doctor, no magic bullet that changed the outcome. I wish I had an answer for other couples that are struggling with RPL, but all I can try to offer is a story of hope. It's difficult to understand the pain of RPL until you've lived it and I don't wish that upon anyone. It could have been that with all my doctor's appointments and nutritional supplementation, I was perhaps taking better care of my health than I ever had before - or it could have just been and end to a streak of misfortune.  I'll never really know, but I'm grateful for my doctors for trying their hardest to figure it out, I'm grateful for the women in my support groups who have endured the same pain and shared both experience and strength, and for the women who shared stories of their rainbow babies that kept me from falling too far into a pit of despair when hope seemed so impossible and pointless.

And I'm grateful for rainbows.