Showing posts with label pregnancy loss. Show all posts
Showing posts with label pregnancy loss. Show all posts

Wednesday, October 13, 2010

Hughes Syndrome

The search for an explanation of my losses and other pregnancy problems has always led to two theories: 1) a blood clotting disorder or 2) a genetic issue. The genetics theory is discussed here.

Since my recent visit with the perinatologist, I've been wondering more about the clotting theory. As I posted previously, there are some clues that this might be the case but my lab test results don't fit neatly into the diagnostic criteria. To get an official diagnosis one has to exhibit certain symptoms AND have conclusive positive lab tests. Here are the symptoms of the clotting disorder Hughes Syndrome (a.k.a. antiphospholipid antibody syndrome) and whether I have them:
Blood Clots that cause "young" stroke or heart attack (under age 45), pulmonary embolism (clot in lung), or deep vein thrombosis (usually in the leg).

I've had none of these (yay!). There's no family history of this either. The only clot problem I've ever had was a *blush* debilitating thrombosed hemorrhoid following my first child's birth. According to my doctors, this clot does not count. I can tell you, though, that the indignity of stirrups is nothing compared to the humiliation of butt surgery done under only local anesthesia.  Moving on . . .

Pregnancy problems -
Intra-uterine growth resriction (IUGR) - Yes, my first child had this
Placental abruption - Partial abruption was suspected during labor with my second child, but it was never confirmed
Miscarriage, particularly in mid-pregnancy - A big YES on that one
Pre-eclampsia - No
Infertility - yes

Memory loss - My memory has not been great in recent years, but it's improved since this. I've always attributed it to trauma, inadequate sleep, anxiety, and all the drugs I've been on. My kids never let me forget that I'm "not a good rememberer"!

Headaches, especially migraines - I've never been one to get a lot of bad headaches but lately I've noticed subtle headaches practically every day. They rarely interfere with my normal activities. I suspect (and hope!) they're caused by stress, anxiety, etc and not by tiny blood clots in my brain!

Cold skin - I seem to have poor circulation in my hands and feet compared with most people. I've noticed my feet sometimes turn purple (but aren't uncomfortable) when I stand in one position for 15 minutes or so. Also my hands are like ice all winter even if I'm indoors all day. I noticed this long before I ever tried having babies, but I never thought for a moment that having icy hands could be a harbinger of doom!

Purple-blue discoloration of the skin, particularly around the knees and elbows - I've noticed this around my knees sometimes after showering.

Shortly after my losses I mentioned these supposed signs to my doctor and he dismissed them as "grasping at straws". As a result, I haven't brought it up again with subsequent doctors, but maybe there is something significant here after all.

Other than the pregnancy issues, most of the symptoms I have could easily be dismissed as subtle or subjective. I mean, everyone gets headaches. Everyone forgets things. Everyone gets cold, especially here in Minnesota! How do you know when you're outside the normal zone?

If thrombophilia (too much clotting) IS my problem, then there may be hope for me assuming I can ever actually get pregnant. According to several studies, Hughes Syndrome patients' odds of successful pregnancy are about 20% without treatment.  My success rate thus far is 40% - lucky me!  With aspirin and heparin treatment it goes up to about 80%. I'd love to give heparin a shot! Now if I could just get pregnant . . .

Wednesday, September 22, 2010

Our Family


My daughter Tania, who just started half-day kindergarten, drew this picture of our family for her class:

On the right she drew Daddy, then Mommy (me) with Jeremiah and Miles next to me, herself, and her brother David.  I was amazed that she thought to draw her lost brothers in the picture.  She was one when we lost Jeremiah and two when we lost Miles.  They were both five months along, so of course she never saw them or knew what was happening at the time. 

Ge-ge and Mei-mei head off to school
(That's "big brother" and "little sister" because
they go to Chinese school)

Now that both David and Tania are in school, I have two hours a day without any kids. It's more "me time" than I've had in years. It's nice to have some uninterrupted time and I get a lot done, but the house is just too quiet! Sure wish I could get rid of these cysts and have another shot at a rainbow baby.  I'd love nothing more than to bring the "me time" back down to almost zero! 

Tuesday, September 21, 2010

"What to Say"

It's been interesting lately to look at the new stats section on blogger.  One post on this blog gets far more hits than any others.  It's What to Say When Someone Loses a Baby.  I posted this a long time ago, before anyone even knew this blog existed.  I hope it's been helpful to the people who've found it.  No one has ever left a comment, but it's good to see that so many people are looking for ways to help friends through a difficult loss.  Let's help them do it right!  If you have any words of wisdom to share with friends of baby-loss parents, please click over to the post and add your thoughts! 

Friday, April 16, 2010

Pregnancy Loss, Habeas Corpus, and Hamster Funerals

It's my one year blogoversary! This blog was intended to document a pregnancy after losing two sons due to cord problems. Sadly, it has instead turned into an infertility blog.

I didn't start blogging until well after the losses. If I had started earlier there would have been a lot of posts about the frustration of dealing with the patronizing, dismissive, and even hostile attitudes of others regarding the loss of my sons.

I've often wondered why people are so unwilling to see babies like mine as people, and their loss as a legitimate reason for grief. I think one reason is what I call "habeas corpus". We're all familiar with the legal meaning; in Latin it means literally "(We command that you) bring forth the body." With pregnancy loss, your loss will most likely be met with little sympathy and your grief not viewed as legitimate unless your child was far enough along AND in good enough condition that you can "bring forth the body" for all to see, either by holding a viewing or having photos to show. Otherwise the loss is so intangible to others that it seems completely unreal.

By the way, while I do have photos, I choose not to "bring forth the body" by showing them to anyone. A person who needs to see them to take the babies' deaths seriously is not the sort of person I want to show them to. I feel it would only satisfy morbid curiosity and is thus disrespectful to my sons.

Since my losses I've noted with extreme annoyance that some bereaved pet owners receive more sympathy and compassion at the death of their dog than I received at the death of my sons. What the . . . ? Has anyone else noticed this?

When my sister lost her beloved hamster Squib (whose amusing obituary is included below) she had dozens of mourners at its funeral. Of course, this particular funeral was just a diversion for college students, but plenty of people do take pet deaths this seriously. In contrast, some of my family members were bitterly opposed to us burying our sons because they weren't deemed worth the trouble and expense.

It's sickening. Animals are being treated more like people all the time, and humans are being treated with less dignity than hamsters.



















Squib Mesocricetus Auratus passed away Monday, December 17 of causes incident to age (ie NATURAL causes). Abandoned at a young age, she was adopted from the Meijer orphanage in January 2006. Acutely aware of her fortunate situation after living in such squalor, she vowed to champion the cause of homeless hamsters everywhere. This never happened, but it was nice of her to care.

Squib was a tolerant, docile beast with a keen mind as hamsters go and a strong love of stunning acrobatics. Her beady little black eyes would light up at the sight of her bungee-jumping harness. Other favorite activities included chewing on things, traveling, sleeping, and the occasional escape. Her one regret in life was that Ellen never petted her.

Squib was preceded in death by the predecessor hamster Jerome (thanks Carmen). A viewing will be held Tuesday, December 18 at 7:00, followed by a short but moving funeral. Internment will be on the grounds of Laura's condo.

In lieu of flowers, Squib requested that cash donations be made to help alleviate the exorbitant costs of burial and the poor fuel economy of Jaclyn's Jeep.

Saturday, March 20, 2010

A New Vocabulary

Recent years have permanently altered my perspective on just about everything in life. Here are but a few things that have taken on entirely different meanings courtesy of loss and infertility. Anyone have any others to add to the list?


Beta then:

Beta now:
Note: "Beta" refers to the blood test to check for prenancy. You go to the clinic to get blood drawn and they call you later in the day with the results.

Baby Dust then:

Note: People who are trying to conceive (TTC) often wish each other "baby dust" on message boards, etc. as a way of saying "good luck".


Baby Dust now:


Belly Shots then:


Belly Shots now:


What to Expect When "Expecting" then:

What to Expect When "Expecting" now:


Update: All is not doom and gloom for us on the TTC front, despite recent posts. There may be hope yet, on which more later.

Wednesday, January 20, 2010

This May Be the Only Way I Can Make a Decent Egg...

Last spring I tried my hand at the art of pysanky (a.k.a. Ukrainian eggs) and have found it to be a fun and unusual hobby. Pysanky are full of symbolism - there's the symbolism of the egg itself, symbolism in the design, and also symbolism in the colors. This egg, my own design, is a representation of the contrast between how most people see pregnancy and birth (full of joy, something beautiful) and how I now see it after suffering multiple losses and infertility.

The egg: birth, new life, fertility



The design: Calendula (orange) - grief, despair, sorrow
Nightshade (purple) - deception, danger, death
Weeping willow (green) - mourning
Forget-me-not (blue) - remembrance




The dominant colors:
Orange - endurance, strength, ambition
Green - hopefulness
Black - darkest time before dawn, death, fear
White - the color of birth, light, and rejoicing is notably absent



So ... leave a comment - tell me a little about yourself if you haven't been here before. How has your perspective on life, birth, and death been changed by your experiences? I'll put your name in a hat and my impartial four-year-old will draw one. The winner will get a pysanky designed and made just for you!



Wednesday, December 9, 2009

A Not-So-Craptastic Christmas?

This picture pretty much reflects the way I see Christmas these days. It scares me.

The last three Christmases in a row have been downright horrifying for me, so I am pleased to report that thus far this December, no calamitous new misfortune has befallen my family. Well, my husband did learn that his job is in jeopardy, but at least for now he still has one.  Could 2009 be the year we finally have a Not-So-Craptastic Christmas? Here's a quick review of our last 3 craptastic Christmases:

Christmas 2006: In late December 2006, our son Jeremiah died at 5 months gestation, though we didn't find out until January 2 of 2007. I can't look back on that Christmas with any degree of fondness knowing that my son was dead inside of me.

Christmas 2007: After losing Jeremiah, I was able to get pregnant again quickly and our son Miles was due at Christmastime 2007, but instead he also died at 5 months gestation. Christmas 2007 was abysmally depressing because I didn't get what I wanted for Christmas - a new baby under my tree.

Christmas 2008: Having just been diagnosed with secondary infertility, hubby and I were finally able to bury Miles' remains with his brother during a visit to my hometown. Jeremiah had been buried, but we had to have Miles cremated due to logistical and financial issues and unsupportive family.

I very much doubt that Christmas can ever again be the joyful time of year I once loved. Instead a happy Christmas is now simply one where nothing tragic or traumatic occurs. This year has been far from gleeful, thanks to several failed fertility treatment cycles, eight months (!) spent on the PILL thanks to painful cysts, a miscarriage, and the recent sudden death of my brother, but we've suffered no additional loss in December. I'll take what I can get.

For my family, this Christmastime is an improvement on the last three. We chopped down our own tree, which my 6-year-old David likes to "bask" under and has declared "exquisite". My adorable four -year-old Tania has been singing "I Want a Hippopotamus for Christmas" over and over. We hosted a fun gingerbread-house-making party at our house, which was the social event of the season. AND the cyst I'd feared would wreck this Christmas by landing me in the O.R. again instead still has me in wait-and-see mode and in pain - but not surgery. Hooray!

Here's hoping that my family and yours can have a happy trauma-free December this year, and that next year will be far better still.

Wednesday, July 22, 2009

What to Say When Someone Loses a Baby

Even if you have been spared the heartbreak of losing your baby, you know people who have lost theirs or will suffer such a loss in the future, and it's good to know what to say when it happens. People said some REALLY stupid things to me when I lost my babies. So, in the interest of helping you avoid being that really stupid person next time someone suffers a loss, here's my list of the Top Ten Really Stupid Things People Say When You've Lost Your Baby:

10) Don't tell me the story of how you (or someone you know) once had a miscarriage at 4 weeks along and how disappointing it was even though you didn't even know you were pregnant and in fact weren't even "trying" and immediately after that you got pregnant (with TWINS!) and everything was perfect and wonderful. I hate that story.

9) "It wasn't time." I've heard this one a lot. It's like saying there's some pre-destined date (set by God presumably) like ... June 2014. And if I even dare try to have a baby before then it will always end in disaster - because it wasn't time. God does not micromanage our lives in this way. This one is particularly annoying when you say it to someone whose biological clock is winding down fast due to age or health problems. Please ... think before you say something so stupid.

8) "God doesn't give us more than we can handle." Look around - LOTS of people have more than they can handle. If you're not one of them right now, be thankful and refrain from spouting useless platitudes.

I'm also not fond of "What doesn't kill you makes you stronger". Sometimes what doesn't kill you just makes you wish you were dead.

7) "Things happen for a reason" This one I find a little less annoying because it's true - things DO happen for a reason. In my view, the reasons or causes of tragedy (cancer, car accidents, whatever it may be) should be studied with the objective of finding the root cause so we can try to prevent them or minimize their damage. Of course, that's not what the well-meaning people who say this are driving at, but let's at least give them credit for not being flat-out wrong.

6) "At least you have other kids"   Any comment that is prefaced by the words "at least" or "just" is one that minimizes the situation.  To me, this particular comment is one of the worst. It implies that I'm not grateful for the children I have. Believe me, I am. I have never had the luxury of taking fertility or my children's lives for granted. Just because I have living children doesn't mean I don't miss my children who died. In fact, having living children means I know exactly what I'm missing out on.

5) "You have an angel waiting for you in heaven" I don't believe anyone can say this with certainty. I know I can't. 

4) "He/She's is in a better place" Lots of people like to say this, but it's really more appropriate for situations where the deceased was very elderly and/or in severe and prolonged pain without hope of recovery. And even in these situations I'm not sure if the bereaved family would appreciate this sentiment. I know people mean well when they say it, but is my family really such a horrible place for my baby to be? Yes, this world is an awful place - and that is why we need little children to brighten it up! Stop and think about how you would feel if your child or children were in "a better place".

3) "You're young, you can have another" This one is very upsetting to me. First of all, babies are individuals and cannot simply be replaced. Secondly, no one, no matter what their age or health status can be assured of having another one. And the very distressing fact is that women who lose babies are the ones most likely to lose MORE babies. You almost certainly don't know the whole story about the cause of the loss, the woman's age, fertility, or health. You should never say this to anyone.

2) "Just adopt" There's no "just" about adoption. It's a long, expensive, invasive process and there are many things to consider before "just" going down this road. More on this later...

1) "You're not going to try again, are you?" *sigh* Kind of makes me miss Stupid Comment #3. Don't think there's any hope for me? Keep it to yourself. I have all the discouragement and despair I need already.
Hope may not be warranted at this point

Whew...now that we have that cleared up, let's focus in on What to Do When Your Friend Loses a Baby:

1) Assume nothing. Listen and find out what the situation really is from your friend's perspective. Is she disappointed? Depressed? Devastated? Traumatized? Your perception is not necessarily reality. Find out what the loss means to your friend and act accordingly.

2) You can't go wrong in saying "I'm sorry for your loss".

3) Send a card or even flowers, and remember this is a loss for both parents.

4) If you say you're going to do something (call, visit, etc.) make sure to do it promptly.

5) Watch your language - For later losses where the gender is known, use "he" or "she" rather than calling the baby "it". If the baby was given a name try to remember it and use that.

6) Resist judging your friend's reaction to the loss and comparing it against what you imagine yours would be. You may think that after two weeks, or two months, or two years your friend should be "over it". You may think that their grief is out of proportion because the baby was so small. If so, you may be in danger of saying Something Really Stupid. Better go back and review above.

7) If you know the person well, consider finding a thoughtful gift so the parents can have something tangible in memory of their baby. Some ideas: a nice frame for footprints or pictures, a plant, a blanket, a parent/child figurine, a memory book, a necklace or bracelet, something you made yourself, or plant a tree in memory of the baby.

8) Please, please, please be a friend instead of just avoiding the person! Don't know what to say? Then say "I'm sorry, I don't know what to say."

9) Just listen. I know my story is not fun to hear, but it helps a lot if someone takes the time to really listen and care instead of just shutting me down with a comment that minimizes my pain or suggests there are easy answers.

10) Reach out to your friend at especially hard times such as the baby's due date, holidays, or the anniversary of the death. Call or send a card/email.

Friday, July 17, 2009

Miles' Story

Today seems the most appropriate day to post Miles' story, because it was two years ago today that I was in the hospital again, having labor induced again, because we'd just found out our baby boy had died.

Jeremiah had been stillborn on January 5, 2007. This was followed by lots of tests and weeks of waiting for the results. While we waited for results, both of Q's parents and my dad were all diagnosed with cancer.  So far, 2007 was the worst year ever.  Surely things would get better, right? My doctors assured us our chances for a successful next pregnancy were as good as anyone's, so despite our inevitable fear, we decided to try again. Once again, to our shock and great joy, we found out I was pregnant on the first try! Even better, we found out on Easter Sunday and the due date was a few weeks before Christmas! It seemed like such a beautiful blessing.

This pregnancy was not considered high-risk because our recent loss was supposedly random, even though I had pointed out to my doctor that all three of my pregnancies were complicated by cord/placenta issues and that didn't seem random to me. The perinatologist said to take baby aspirin, and I did so from the day I found out I was pregnant. Despite past problems, I was hopeful we'd come home with a live baby this time, even if we did have some complications. I'd never heard of anyone losing multiple babies to cord problems, and my doctors assured me they'd never seen it happen twice.

The first trimester was uneventful. I first heard his heartbeat on May 16, which was Jeremiah's due date. Bittersweet. Naturally, I was nervous about the possibility of another loss, but the first trimester passed without excessive anxiety partly because I knew that if I lost the baby at this early stage it would be less traumatic, at least in a physical sense.

Q and I had decided early on in this pregnancy not to tell family and friends about our good news, though we made a few exceptions for close friends who are geographically distant. The reason for this was to prevent the news from reaching our kids through comments like "You're going to have a new baby at your house!" or "You're going to be a big sister!". We didn't want to get the kids all excited about a new baby again until after we passed the midway point when we were to have an ultrasound at the perinatology clinic.

By 16 weeks, the stress was starting to build. The doctors at the OB clinic said I could come in anytime for a quick check if I got nervous between the regularly scheduled appointments. I did so at 16 weeks and baby's heart seemed to be beating normally. On Thursday, July 12, I started to get very worried and called the clinic the next day to see if I could come for a quick check, even though I had an appointment scheduled for the following Monday. They said they were too busy and I should just keep the Monday appointment. By Sunday, I was frantic and it didn't help when my two-year-old daughter kept saying very matter-or-factly and without a trace of fear, "There's a ghost over there, there's a ghost over there" as she pointed to the corner of my bedroom.

Q came along for my Monday appointment.  I was nervous, but hopeful that I was just being paranoid because of our last loss. Being nervous at this point would be perfectly normal, after all. When it came time to listen to the heartbeat with the Doppler, there was dead silence. As the doctor went to get an ultrasound machine, devastation set in. Why can't I keep my babies alive? How can I go on? Indeed it has been hard to go on since that day, but I try to live for my kids on those many days when I can't live for myself.

Unlike last time, things moved along at breathtaking speed. In less than 24 hours I went from hopeful but nervous, to going home from the hospital with empty arms again.

On our way to the hospital to have labor induced, we dropped the kids off at the home of some friends while my brother drove eight hours to come stay with us and help for several days. This time I was at a different hospital because the one I'd gone to last time was too full to take me right away, and I wanted it over with. In retrospect it may have been better to wait. The experience at the hospital this time was horrifying. Last time the nurses and doctor had been very empathetic because most of them had also lost babies. This time it was strictly business. The computer system was down, so I had to go over which tests I'd had done last time and which ones we should do this time. I couldn't believe I could function enough to do this after being dealt such a blow.

Next, labor was induced with Cytotec. This time it was shorter and far less painful, so I was not expecting what happened. I went to the bathroom alone at 3 a.m. and my water broke. It was dark brown with old blood and then Miles just fell out. He was in much worse condition than Jeremiah had been. The trauma of it did something horrible to my brain - I could actually feel it happening. I must have managed some sort of sound to summon Q, because he came and helped me while a nurse was called in.  After the nurse finally came, I made it back to the bed and started to throw up because I was so disturbed by what just happened.

As we looked closer at him it was clear that he was perfect before death had come to claim him. The cause of death was obvious this time - the cord was constricted to almost nothing near his belly and had a few other narrowed portions as well.

Since he was not as far along as Jeremiah he was a little smaller and weighed dramatically less, perhaps partly because he'd lost so much blood into the amniotic fluid. I suppose he died much more quickly than Jeremiah and I'm glad of that.

Early that morning, I was discharged from the hospital. This time we went home even more empty-handed ... no memory box, no mementos, nothing save a badly-done footprint on a piece of plain white paper. We had taken a few photos ourselves, but they are too difficult to look at.

We had hoped to bury Miles just as we had with Jeremiah. We called my mom to see if she could check with the cemetery about doing so. She was sewing foam clothes with her friends in preparation for the apocalypse.  In an annoyed tone she told us, "I hadn't planned on doing this today". How very rude of us to want to bury our child - we weren't planning on this today, either.

We found out from the cemetery that we could not put another preemie casket in the same grave. To have them together in one grave we had two choices: 1) buy a plot, exhume Jeremiah, and bury both babies in the new plot, or 2) cremate Miles and bury the urn in the grave with Jeremiah and my sister later on. We weighed the options and decided to go with the latter, even though we both didn't like the idea of cremation.

Cremation was just much more practical for many reasons. It was much cheaper. We definitely some financial strain going on, since we'd had to pay for two hospital bills and two mortuary bills in six months' time. Also there were logistical difficulties associated with getting the body and ourselves to another state within the time allowed by law.

Miles was born 9 days short of 20 weeks gestation, the point at which the baby is considered a person and the loss is termed a "stillbirth".  Paradoxically, he was not legally recognized as a human, but was considered "human remains". Therefore, we were subject to laws requiring disposition of the body within a certain time period. So we chose cremation and then buried the urn privately the next time we were in my home state. Certainly there was no peace or closure this time once the burial was done, but it is good to know our babies are buried together, as we wanted.

This time all the tests came back negative, including the repeat test for anti-cardiolipin antibodies and for rarer clotting disorders I wasn't tested for last time. The pathology report on the placenta didn't show any blood clots. Nevertheless, when we met with a perinatoligist a few weeks after the loss, she recommended that I use Lovenox daily if I got pregnant again. I would gladly try it if I ever get that opportunity, even though I can find no evidence that this would improve the odds at all.

The aftermath of this loss was pure hell. After the first loss, we'd gotten pregnant again quickly and that certainly helped. This time we'd lost not only the baby we'd so desperately wanted, but also all hope of ever having the family we'd wanted. Q was expected back to work sooner this time, and I was on my own with the kids sooner. In the month following the loss, Q was often out of town or out of contact because of his job. The first day I was on my own I had a panic attack. My whole world had changed permanently, but in a way that was completely intangible to everyone else.

Of course, the maternity clothes had to be packed away again - a tremendously depressing undertaking. But I was glad we didn't have to explain to the kids - again - that our baby had died. We had intended to tell them about the baby in one more week, after the 20 week ultrasound.

I am, of course, even more thankful for my living children, but it's been brutally hard to care for them as I want to. I am not the mother I want to be. I now have depression due to past events and anxiety due to a very uncertain future. Depression is at least familiar, but anxiety is new to me. The heart palpitations, which had gone away during this pregnancy, came back when it tragically ended. Also now I have what's called globus sensation (or globus pharyngeus) which feels like something is stuck in my throat - it's very annoying and caused by extreme stress. And there's also chest pain, shortness of breath, excessive sweating (lose weight without diet or exercise - ask me how!), nightmares, poor memory, and sleep problems. On top of that there's pelvic pain and a few panic attacks thrown in for good measure. I don't like people seeing me in such a state, of course, so it's also been extremely isolating. And yes, I have tried both counseling and drugs, but found neither to be helpful and in fact the drugs seemed to make things worse.

A baby would have been such a happy ending to a very hard year. 2007 brought us two dead sons and three cases of cancer in the family. It also absolutely ruined Christmas for me because Jeremiah died at Christmastime and Miles was due at Christmastime.

Two long years since Miles was born still, I miss him every day and wish desperately for an end to this whole ordeal.

Tuesday, July 7, 2009

Jeremiah's Story


The day I found out I was pregnant with Jeremiah we were on family vacation in Yellowstone. Q and I were thrilled, especially since we'd gotten pregnant on our first try (again!) despite all my pain and problems. A few days later we stopped at the cemetery in my hometown to visit my sister's grave - the same grave where Jeremiah would be buried just a few months later.

I'd been nervous about getting pregnant again, mostly because I'd had some painful birth-related injuries (trust me, you don't want to know) with both of my prior births. They took 6 and 15 months to heal, respectively, but are definitely totally unrelated to the losses we later experienced. So naturally I was worried for myself but also very concerned about how small David had been at full term, how brutal and long labor was (30+ hours each), how doctors had commented on the placentas and cords, and other complications. I went to the OB/GYN just weeks before I got pregnant with Jeremiah to get a checkup and ask if she could see any reason to be concerned about another pregnancy with my history. She said everything seems fine and there was no reason to expect any recurring problems.

With Jeremiah, I had morning sickness in the first trimester, as expected, and was measuring right where I should be all along. I remember feeling so hopeful when I hit the 20-week mark - maybe all my fears were unfounded after all!

Then just before Christmas (maybe it was Christmas Eve - wish I could remember the exact date) I was wrapping presents in my bedroom after the kids were asleep, when I suddenly got a strong impression that there was a man standing about 6 feet in front of me and that he'd come to take the baby. I tried to dismiss this as ridiculous and paranoid. Sure, I'd had some trouble with both of my previous pregnancies but not until the third trimester, and things seemed to be going perfectly this time. I went to lie down for a minute and thought I felt the baby move, so I dismissed my impression as silly worrying. Only later did I realize that the movement I felt that night and in the following days was Jeremiah's body moving around in the amniotic sac in response to my movements.

By New Year's Day I was getting worried, though I kept it to myself.  When I was 20 weeks pregnant with David he was kicking hard enough that Q could feel it, but nothing like that with this one. I had an appointment the next day which I hoped would end the worrying.

My two small kids came with me to the appointment and played in an adjoining room while the midwives checked me. I measured 21 cm - just right. But then they tried to find a heartbeat with the Doppler and couldn't. They tried another Doppler and then another. Nothing. They said to call the OB/GYN clinic and get in for an ultrasound. I gathered up my kids and went to the car, stunned. I called Q at work and told him they couldn't find a heartbeat. He left work immediately and somehow I managed to drive home.

Next we went to the clinic at the hospital and they couldn't find a heartbeat with the Doppler either, but told us we would have to get a detailed ultrasound to confirm if the baby had died. Since it was the day after New Year's everything was booked and we were told we'd just have to wait until the following day for that. What a long miserable night that was, knowing our baby was almost certainly dead inside me.

The next morning a friend watched our kids while we went for an ultrasound. That's when we found out our baby was a boy - with no heartbeat. There were no obvious problems or deformities seen. We cried all the way home.

In the afternoon we met with a doctor and discussed our options - either wait and see if labor would start on its own or go the hospital to be induced. The choice seemed obvious - go to the hospital. I was horrified about what was about to happen, but also anxious to get it over with.

At the hospital we had to walk to our room in the maternity ward, past all the beautiful, healthy, live babies being wheeled down the hall to their mothers. Devastating!

Once in my room it was a long wait before the nurses came to give me the first dose of Cytotec, a very unpleasant procedure indeed, and this was repeated every four hours. Cytotec, by the way, is an ulcer drug commonly used for labor induction but not approved for this purpose. After awhile the cramping started and became progressively more powerful over the next several hours. I had decided to forego an epidural or any other drugs because I'd gone "natural" for 30+ hours of labor for each of my previous full-term births, and was sure this would be quicker and less physically painful.

As midnight approached the pain was as intense as it had been for my full-term births. Since time had lost all meaning, I don't know how long it went on like this - maybe an hour, or even just a half-hour? When the pain eased up for a few minutes I got up to use the bathroom and felt what I thought was his head coming out. After quickly going back to the bed, he was delivered breech by the nurses. I was glad they were in the room at that time because I had been afraid of being alone when it happened, as babies so small can come without any warning. He came out with the amniotic sac intact, so the nurses broke it open, took him out, cut the cord, and put him on a folded up blanket. The nurse asked, "Do you want to see your baby?". I had her describe what he looked like so I could be prepared in case there was something very wrong. She responded that he looked perfect, but had some swelling of his head and neck, which commonly happens after an intrauterine death.

We held him for a long time - our perfect baby in miniature. He was 8 1/2 inches long and barely under one pound (15+ ounces). We were amazed at his tiny fingernails, his perfect feet, his face that looked so like David's when he was born. If he'd been badly deformed, I could at least be happy for his sake that he could find peace in death rather than living a life of extraordinary pain and difficulty. But there was no sign that he was anything other than perfectly healthy, which made the situation feel all the more tragic. I hoped that with all the testing to be done we could get some kind of medical explanation for our loss.

The name Calvin had been chosen long ago if the baby was a boy, but since the unthinkable had happened we decided to name him something we'd never thought of. At my sister's suggestion, we named him Jeremiah, from the Bible verse Jeremiah 1:5 "Before I formed thee in the belly I knew thee." We felt this name was more appropriate for the situation, and especially since Jeremiah was born on January 5 (1:5).

As we were holding Jeremiah, the doctor became concerned because the placenta had not delivered and there was still quite a bit of bleeding. According to her, the odds of this happening for a mid-trimester loss are about 1 in 5. The placenta did deliver soon after, but was incomplete. Q held Jeremiah and nervously rocked him back and forth just as if he were alive, while nurses on either side of me held my arms down. Then the doctor reached in me with her whole hand and tried to pick out the retained bits of placenta. It was so painful that even now, 2 1/2 years later, the memory of it turns my stomach. After a few tries like this with little success, the nurse put in an IV and gave me Pitocin and Fentanyl for pain before the doctor tried again, this time with ring forceps. The fentanyl did little for the pain, but the remaining pieces of placenta were successfully removed and I was relieved to avoid a D & C.

After this ordeal the nurses took Jeremiah away to take photos and footprints. Then they brought him back for our last goodbye. We were alone for a few hours. Q dozed off.  I cried, eyes closed, and felt my sister come in and give me a hug before leaving without a word. 

We made arrangements for a local mortuary to take his body to the airport for transport to my home state, where we would bury him at the foot of my infant sister's grave.

Later that morning we left the hospital. I'd thought it was hard leaving the hospital with empty arms when David was born, because he was in the NICU for 5 days but I was discharged after only one day. This time we left the hospital with only a memory box. It is nice to have something tangible to remember our baby - a little teddy bear the nurses had photographed him with, his tiny perfect footprints in ink and in plaster, and a few other small mementos.

Once home, our greatest joy was to see and hold David and Tania again. It was so sad to tell them their baby brother had died. Tania was not quite two years old, and didn't really understand. David, however, had been very excited about the new baby we were going to have.

Over the next week, I took down the crib and packed away the maternity clothes. Q tried to work from home and also made some brief appearances at the office. I lost 10 pounds in 3 days - why bother eating when the baby I was trying to nourish was dead? We arranged everything for the burial out of state and then tried to figure out how to get our family there -driving that far in January was out of the question and flying was too expensive. My best friend and her pilot husband made it possible. We were able to get inexpensive standby tickets and had to wait at the airport for only a few hours before we were able to get on a flight.

The mortuary in my hometown provided a tiny casket for Jeremiah at no cost and we were able to transport and bury him without spending a large sum of money. My parents (especially my mom) had been opposed to our burying him because of the cost and inconvenience, and would have preferred that we had the hospital 'dispose' of him. While it certainly is costly to pay for a birth and a burial at the same time, we felt this is the right thing to do for our son. Thankfully, my parents did not object to our burying him with their daughter, my sister - and I'm certain she doesn't mind sharing her grave.

Our time at the cemetery was brief because of the bitter cold. We had a lot of family come to support us, as well as my friend and her family. We were very grateful we were able to bury our son. It felt like closure. We had no idea our nightmare was just beginning.

After returning home, we tried to establish a new "normal". Q went back to work and I tried to make life as normal as possible for the kids. Every moment of every day I missed Jeremiah horribly and felt terribly alone. He'd been growing and moving, and now there was only an emptiness that nothing else could ever fill.

A few weeks later all the test results were in. All were negative except for a moderate positive result on anticardiolipin antibody IgG, which we're told is not significant unless there is also a positive result for IgM; after six weeks this was retested and the level was "inconclusive". I got copies of my file from my doctor and noticed on the pathology report that Jeremiah's cord was "hypercoiled". No one had mentioned this to me. I called my doctor . Wasn't it suspicious and strange that all three of my babies had something odd about their umbilical cords and/or placentas? I was told the answer is no - this loss was just a fluke, just bad luck. I could go ahead and try for another pregnancy as soon as I wanted. He discussed it with the perinatologist and she said I should take baby aspirin in my next pregnancy, just in case. Three odd umbilical cords in a row and all I get is "take an aspirin and call me in the morning."? This did not feel right.

By this time I had started having chest pain and heart palpitations pretty consistently for 2-3 days each week. My doctor said to get it checked out just in case, so I was referred to cardiology at have an EKG, echocardiogram, and be hooked up to a Holter monitor for 24 hours to try to pick up the irregular heartbeat. But, of course, a monitored heart never skips. I'm told everything looks OK - it's probably just stress. Now I'm a little less stressed about the stress-induced problem, but it's still disturbing on days when it's happening 5-6 times a minute.

With all the test results in and no clear answers, we decided to try again. We were worried but felt the odds were on our side. We'd never heard of anyone suffering multiple losses like the one we'd just had. Our doctors said they'd never seen it. We figured it would probably take several months to get pregnant so we might as well start trying. We never imagined that in six month's time we would have another dead baby in our arms.

Sunday, May 31, 2009

What to Expect When You're Expecting a Dead Baby

I had no idea what to expect when I found out my baby Jeremiah had died. Knowledge is power, especially in a difficult circumstance. Here's some basic useful information on what to expect when you've just found out your baby has died beyond the first trimester of pregnancy:

Having the Baby

When most people think about pregnancy loss, what comes to mind is early miscarriage.  Often nature will take care of things, and if that doesn't work or you just want to get it over with, you can have a D & C. I haven't had an ectopic pregnancy, which sounds particularly awful. I did have an early loss myself (5 weeks along) and was pleased that nature took care of it, making it merely devastating rather than traumatic. Win!

With late loss there's a much bigger baby that has to get out somehow.  There are three unattractive options -
A) Waiting,
B) D&E - dilation and extraction, or
 C)induce labor

Generally, your choice depends on how big the baby is. If it measures about 16 weeks, your choice will probably be between A & B. If it's larger, you may be able to choose between A & C. If you're within a couple weeks of that guideline, you may be able to choose between the three.

A) Wait for labor to start on its own

Pros:
  • You don't have to have invasive medical procedures
  • You can be at home instead of in the maternity ward
Cons:
  • It's unlikely to happen in the short time you'll be allowed to wait; most doctors don't want you to wait more than a few days because of the risk of infection
  • If you have the baby at home, it's harder to get all the testing you may want done if the cause of death isn't something obvious
  • You won't be able to function at all while you wait

B) Have the baby removed by D & E

Pros:
  • It's quick
  • Although you can't see the baby (unless you absolutely insist on it and have a strong stomach), you can have it cremated and choose what to do with the remains
Cons:
  • Possible side effects - hemmorhage, infection, uterine perforation, cervical laceration
  • You can't see the baby because it is removed in pieces
C) Induction of labor at the hospital

Pros:

  • You can see and hold your baby if you want to and you can choose what to do with the body
  • Having an intact baby and placenta can give you valuable clues about why the baby died
  • Hospitals often give memory boxes, memory books, or some other kinds of mementos to families that lose babies; you could also have photos taken and get the baby's footprints
Cons:
  • It can take a long time - plan on about 12 hours.
  • It can also be intensely painful, but since you don't have to worry about drugs harming the baby, you can choose whatever pain control works for you.
  • The drug used to induce labor, misaprostol, is not FDA approved for labor induction, although it is widely used for this purpose and quite effective.
  • Not only do you have to be hospitalized, but you have to be in the maternity ward with all the happy new mothers and their beautiful live babies.
  • Possible complication - retained products of conception, meaning everything that should come out doesn't. According to my doctor the risk of this is about 20% and the problem, if there is one, usually is that the placenta or pieces of it have to be removed either manually or by D & C. This happened to me with my first loss. Not fun.
Also, you should know that your hospital bill will be for "labor & delivery" with the charges being the same as if you'd delivered a full-term live infant, even though you won't receive anywhere near the time and care you would have gotten in that case.

What to Do with the Body

Again, three possible options:

1) If the baby is less than 20 weeks gestation (and thus a "late miscarriage" rather than a "stillbirth"), the hospital can handle disposition of the body if you choose. Some hospitals will cremate the baby together with other babies that have been lost (the hospital I went to does this every 3 months) and then the ashes are scattered at a local cemetery. If your hospital does this, it can be a nice option.

Other hospitals toss the bodies in with all the medical waste and incinerate them. I know it doesn't make any difference to the baby, but to me it's disrespectful to dispose of a baby the same way you would dispose of a cancerous tumor or a diseased gall bladder, if you can avoid it. That's why it's important to know your options.

2) If the baby was past 20 weeks gestation, it is a stillbirth and you are responsible for the body. Cremation can be a very practical option to consider.

Pros:
  • Removes many difficulties you'd face if you want to bury the baby at a later time or in another state.
  • It is easy to transport and bury the urn when and where you choose.
  • Some parents keep the urn and will have it buried with them when they die.
  • It's pretty inexpensive. In my case, a little over $300.
Cons: Some people, myself included, just don't like the idea.

3) Burial

Pros:
  • Many mortuaries provide tiny caskets free of charge to parents who lose babies.
  • Having a burial service and a place to go to grieve your child.
  • You can have the baby buried at the foot of a family member's grave, saving the expense of buying a burial plot.
Cons:
  • Compared to cremation, this option is more expensive and difficult to arrange.
  • Others (family, friends, coworkers, etc.) may think you're strange or even criticize you for wanting to bury your baby, especially if you want to bury him/her in an existing family grave.

Other Considerations


Choosing a name: I strongly recommend naming your baby. You will be talking about the baby in the future, if only with your spouse. It's much nicer if you don't have to refer to the baby as "it". This is especially true if you suffer multiple late losses: "It #1, It #2, and It #3?". It could get very confusing. Even if you weren't able to determine your baby's gender for certain, consider choosing a name that could work for a boy or a girl.

Medical testing: Testing to find the cause of the baby's death can cost thousands of dollars, especially if tests for genetic problems are done. Some tests can also be painful and invasive. And after all that, a cause can only be found in about half of all cases! But it's still a good idea to find out what you reasonably can. You'd just better hope you have good health insurance!

Certificate of Stillbirth: If you lose your baby beyond 20 weeks, many states (25 as of now) will issue you a certificate of stillbirth if you submit the paperwork and fee to get one. This at least acknowledges your baby as a human being, much to the consternation of pro-abortion groups. If your state does not offer this, consider getting involved in promoting legislation. Arizona even allows parents to take a state tax exemption for a stillborn child, which is very helpful in offsetting some of the potentially significant expenses of burial or cremation.

Dealing with other peoples' reactions: Generally, you can expect any support you get from family or friends to be directly proportional to how far along you were when you lost the baby. The exception to this is if you've had multiple losses. In that case, the more pregnancies you lose, the harder it gets for you and it seems the less support you get from anyone else. This was certainly true with my two late losses and I have it on good authority that it gets worse from there - by the third or fourth loss people can be downright hostile towards you for trying again.

So, be prepared for the following reactions but hope for better:
  1. Being patronized, humored, or even criticized for naming and/or burying your baby or for being sad/depressed about the loss
  2. Unless you lost your baby quite far along AND the body was in good enough shape to hold a viewing, the loss is totally intangible to everyone else and thus, is not real. People are very dismissive about it and wonder why you're so upset.
  3. People don't know what to say, so you may be avoided and ignored.
  4. You will be expected to be back to normal after about 2 weeks. After that people expect you to just be over it and get impatient and upset with you if you aren't.
  5. Friends who are pregnant or get pregnant in the future may avoid you and this is just hard for everyone.

Saturday, April 18, 2009

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!