Did I Tell You? (On Clotting Disorders)

I know this post seems out of the blue - everything will be explained in he next post. But as I was typing The Next Post, I was reminded of something that I meant to tell you, and I'm not sure if I have yet, just in case it might help someone reading.

You might recall that, when I was in the hospital with HELLP Syndrome, I tested positive with a whole host of clotting disorders (lupus anticoagulant, anticardiolipin antibodies igm, protein S deficiency, and MTHFR). After my pregnancy, however, I only tested positive for slight protein S deficiency and MTHFR - I was no longer actually a clotter in the eyes of my hematologist. (Which is wonderful in terms of my overall health.) In the eyes of my MFM however, I for some reason became a clotter when pregnant

You might recall that the role of clotting disorders in pregnancy is still being understood. That the evidence linking clotting disorders and preeclampsia is not concrete, and is actually becoming shakier over time. Nonetheless, due to my history, I was on Lovenox throughout this pregnancy.

You might also recall that my MFM has a remarkable way of not providing direct or concrete answers to questions :)

You might therefore understand my surprise when he - twice now- directly answered my question of "What happened?" What went right? Why was this pregnancy so strangely uneventful?

I first asked him in the delivery room while he was stitching me up (What? I had a captive audience!), and again at my 6 week appointment. He clearly and succinctly responded: 1) I was carrying a single child rather than multiples, and 2) "We realized that [I] needed to be anticoagulated."

So there you go.

I'm not saying that my MFM knows any more than the next. There is certainly a wide range of opinions out there on the subject of whether and which women should be anticoagulated during pregnancy. But I will tell you that, in my eyes, my MFM is the reason this baby is laying across my lap right now. And if he says that Lovenox was the magic ticket, then that's all right with me. And for anyone out there facing a similar circumstance - I just wanted to share.

The Thing About Preeclampsia

Some time ago I received a phone call from a friend. She was late in the third trimester of her second pregnancy. She had been experiencing swelling and high blood pressure, and at her last appointment was told that she was spilling protein. Her doctor casually mentioned “preeclampsia.” So she called me.

I asked my friend for her lab numbers. And honestly, I was worried. Something was definitely going on. I know my story is the very rare worst case scenario, so I always consciously try to walk the fine line between trying to educate people about this little-known condition and, well, stepping out of place.

But my friend called for advice, so I tried to give it in a calm, non-alarmist manner.

I casually suggested that my friend buy a blood pressure cuff and that she push her doctor to do a 24 hour urine test. But it was the strangest thing. . . after calling me for advice – she kind of brushed me off! Denial, no doubt. But the most troubling part was that it seemed as if her doctor was being rather lackadaisical about the situation, too. But whatever. “Well, trust your doctor, I suppose. I’m sure he knows what’s best. . .”

After that, I called my friend several times to check up on her.

“So, how was your blood pressure today?,” I asked.

“Oh, a little high, but they did another ultrasound and the baby looks great!”

“Yes, but what about protein? Are you still spilling protein?”

“Yeah, I think that’s gone up a little, too. But the baby still has plenty of amniotic fluid, so that’s good!”

“Yes, but. . .

“And he’s still measuring right on track!”

“Yes, but. . .”


She kept insisting. . .

And I just wanted to scream: IT DOESN’T MATTER!!!

Let me tell you about our babies. They were beautiful. And perfect. Measured right on track. Perfect levels of amniotic fluid. Ten fingers and ten toes.

But it wasn’t enough.

People always worry and talk about the baby’s health. But what about the mother?

See, that’s the thing about preeclampsia/ HELLP Syndrome. (And, I suspect, the thing about preterm labor and placental abruptions and incompetent cervixes, and a whole host of other conditions about which I do not know enough to address.) It’s not a condition of the baby. Preeclampsia certainly affects the baby; it can cause IUGR or low amniotic fluid or, obviously, prematurity and death. But it’s not a condition of the baby.

It’s a condition of the mother.

Here in the south we have a saying: If mama ain’t happy, ain’t nobody happy. (I suspect that there is a comparable northern saying that simply involves better grammar.) But what about – if mama ain’t healthy, ain’t nobody healthy?

And I’m not talking “not healthy” as in the mother drinks a gallon of Jack and smokes a carton of cigarettes a day. In the case of preeclampsia, I’m talking “not healthy” as in the mother’s body rejects – violently and unequivocally rejects - the foreign matter inside it. The foreign matter that, for years, was dreamt about, and hoped for, and prayed for, and cried for (and, quite frankly, paid for).

Women like my friend like to talk about A Mother’s Love; about how they've never known a love so great and how they’d do anything for their children. Well, I’m here to tell you this – I would have done anything for those babies. I would have given my life.

Take me, not them I wanted to beg the doctors - even as they were explaining to me that that simply wasn't possible. Even if I had given my life – even if I had died right then– they still would have died, too. Not because anything was wrong with them. They were just too small to make it. They died all because I wasn’t healthy.

So, did I say all this to my friend? No, of course not. I just kept trying to steer her with the “Yes, but’s. . .,” while silently begging her to keep an eye on her own health for the sake of them both. And I kept listening to her carry on – insisting – about how perfect her baby was.

And then I got off the phone, and whispered to myself. . . Mine were, too.

MINE WERE, TOO.



(Of course, all babies are perfect and the above is not to say or suggest anything about those who have died because of his or her own health condition. I'm just sharing the other side of the story which is apparently little known to those outside our community).

Trying To Make Some Good

One of the things we did over our Due Date weekend was make plans to attend a Preeclampsia Foundation Awareness Walk. It’s Mothers’ Day weekend, and we have to travel 5 hours away for the closest Walk. . . And I’m terrified! I don’t have to tell you all how terribly difficult it’s going to be to attend this family-friendly event without our sweet babies, but we just really feel compelled to honor their memory in this way.

I know that everyone has their own causes, and I know that we’re all stretched thin during these times. And I know that it’s super uncomfortable for me to ask people for things – anything! – especially people like you who have been so wonderful and supportive of us :)

But I also know how many of you have also been touched by preeclampsia/ HELLP Syndrome, and I know how many of you care about me and B. So I wanted to at least let you know what we’re doing and give you the opportunity – and ask you kindly – to support us and the Foundation by donating to our Walk.

Most of you already know my story, so I won’t bore you with it now. (If you don’t, you can click here to read about the day the wheels fell off.) The short version is that I developed HELLP Syndrome, which is an extremely severe variant of preeclampsia. Preeclampsia causes a woman’s blood vessels to constrict, resulting in high blood pressure and a reduced blood flow that can affect organs throughout the body including the liver, kidneys, and brain.

HELLP Syndrome is very rare; however, preeclampsia is all too common. It is the leading known cause of premature births in the U.S., and it affects as many women in the U.S. as does breast cancer. Preeclampsia complicates 5-8% of all pregnancies: nearly 350,000 women each year in the U.S. alone. Over 1,500 women each week reach severe or critical status as I did and, even in the U.S., at least 2 mothers die each week because of this condition. Worldwide estimates suggest that preeclampsia causes 76,000 maternal and 500,000 infant deaths each year.

But the worst part is this: Preeclampsia has no known cause, and has no known cure other than delivery of the baby.

The Preeclampsia Foundation is dedicated to raising public awareness and funding innovative research for preeclampsia. Please consider supporting us and our Walk by donating to the Foundation! You can send us send a check made payable to the Preeclampsia Foundation, and we be honored to present it to the Foundation at the Walk. (Please email me for a mailing address.) Or, if you prefer to make a credit card donation simply go to https://www.preeclampsia.org/pfwat/watdonation.asp, and make sure to indicate that the donation is made in memory of "Baby A and Baby B." I'm asking for this notation for record keeping purposes only - I know your own babies will be on your heart! All donations are tax deductible.

Please don't be upset with me for writing this post! Like I said, this is definitely not comfortable for me, but we're trying to reach out to all our family and friends - and you're my friends :) (Lucky you!)

Thank you so much for your continued love and support! And thank you for helping me fight preeclampsia and HELLP Syndrome.

November 10, 2008

There are two dates every month that make me catch my breath: the 10th and the 12th. November 12th was the day our babies were born still. But November 10th was the day it all started falling apart. The 10th is the day that I clearly remember, that I replay in my head over and over. . . after that, it’s all a bit of a blur. Today marks three months from the 10th.

I know this post will be lengthy. Feel free to skip it (but come back tomorrow!) But the memories are so clear in my head, I have to write them out. . .

November 10 was a Monday. We had spent all weekend cleaning out the office-to-be-nursery. B put the cribs together. We stood back and looked at the room and the two cribs together and just said: “Wow! We’re having twins!”

FROM BAD
Monday morning I went to court to argue a motion. I was wearing my favorite black pantssuit and red heels. And I won. That afternoon we went for our “big” ultrasound at our MFM’s office. They looked at and measured every perfect inch of our tiny babies. For over an hour B and I watched them and talked to them, and fell more in love with them.

Baby A looked perfect. But while looking at Baby B, the tech said she couldn’t get a good picture of her heart. She called in one of the MFM doctors, who agreed that she couldn’t get a good picture, but seemed to think there might be a problem with the left side of her heart. She scheduled us to come back in one week and retest; hopefully it would be easier to get information at that point. Baby B was smaller; maybe it was just too early to see well.

The doctor also asked for permission to rerun our amnio test for Baby B. She thought that Baby B’s heart problem (if there was one) could be a sign of the generic condition DiGeorge’s Syndrome – a condition illustrated by heart defects and small stature. While she still hoped that everything was fine with Baby B, we discussed that, if the next ultrasound did not show anything different, we would have to meet with a pediatric cardiologist. Baby B would likely need surgery immediately after delivery.

We went from the ultrasound to my OB’s office, where we continued to discuss the ultrasound. After about 30 minutes, my OB switched topics and said that I was spilling protein in my urine. "Do you have an infection?" she asked? "Anything going on?" "No, no" I said, "Nothing that I haven't already told you." She wanted to do bloodwork "stat." We said okay and didn’t think much of it. B and I didn’t know anything about protein, except that I was supposed to eat it! As we were leaving I did stop to ask her – was any of this related? “Humm, good question,” she said, almost thoughtfully. “I don’t think so.”

It was near 5:00 by the time we left my OB’s office. I remember calling my mom as I pulled out of the parking lot: “Mamma. Try to not freak out. And I don’t have any answers. But they think something’s wrong with my little girl.” And as I was saying those words, I saw the lab car pulling in the parking lot to pick up my blood samples.

TO WORSE
I went home and changed. Black yoga pants and a yellow hoodie now. And we started making supper – steak fajaitas. Around 7:00, we were about to fill our plates when my OB called.

She said that my liver enzyme levels were up and my platelet count was down. She wanted me to go to the hospital that night so they could rerun the tests and monitor me for “a few days” – or at least long enough to do a 24 hour urine test. This was all gibberish to me – I’d never heard of enzymes or platelets before – but I knew she was looking out for me and my babies so I went along with it. She said to just go triage and they would decide where to put me. She had a c-section at the hospital that night, and she would check in with me once she was done.

I tried to eat our dinner and help B clean up the dishes. But I did understood enough to be flustered. So he cleaned up while I packed my bag. I packed my makeup, my straight iron, some comfy clothes, a book. . . B said he would go to work for me the next day and pick up some files. As far as I was concerned, I was checking in for a few days of rest and relaxation.

As I was packing my bags my mind necessarily went to the “worst case” scenario. The worst case I came up with would be bed rest – perhaps even hospital bed rest – for the remainder of my pregnancy. That was a looong time, and the thought was terrifying to me. I would go crazy. We’d go broke. If I had to stay in the hospital, how would I get to see enough of B? We spend all our time together. And what about the holidays? . . . . But, I bargained, I would absolutely do any of it, with a willing and happy spirit, if Baby B would just be okay. I knew one thing probably had nothing to do with the other, but bargaining’s never rational. Besides, I was focused on our babies. Particularly Baby B. Potential bedrest – well, that would be my burden to bear. Just so long as the babies were okay . . .

We got to the hospital around 8:00. At some point my OB must have mentioned preeclampsia or toxemia to me, because the nurse at the desk kept asking me why I was there (even though she was supposedly told to expect me), and I didn’t know anything to say other than “suspected toxemia or preeclampsia.” She didn’t like that answer; she wanted an actual diagnosis to put into the computer. I told her I didn’t have one.

We waited and waited, and were finally admitted and in our room sometime after 9:00. I joked with the nurse about how I was finally going to get to catch up on my leisure reading. I'd been resisting reading T.wilight, but this seemed as good a time as any to start.

We were in a Labor and Delivery room, although I didn’t think anything of that, and the first nurse came in around 9:30 or 10:00 to put in an IV port. She said it was just so they didn’t have to keep sticking me; they could use the IV port for everything. Imagine my surprise when the tech came to take my blood and she stuck me again! All I knew at this point was that they were going to rerun the tests that were conducted at my OB’s office to make sure the results were right.

Sometime after 11:00 I convinced B to go home. He had to work the next day, of course, and I preferred that he be at home with the kids (our four-legged ones) anyways. He made me promise to call him if anything happened, no matter what the time, kissed me and went on his way.

TO - there's no words
Not more than a few minutes later my OB came in. I had just been digging in my bag for my book and was settling down to read. She asked where B was. I said that I had sent him home: “Why, do you need him?” She said: “Yeah, I do. Can you ask him to come back?” So, I called B. He didn’t ask any questions, but just got in the car and was back in minutes.

My OB came back in. The nurse was with her, as was someone she introduced as Dr. C. with MFM. That should have told me something right then: it was midnight, and one of the best doctors in Na.shville was in my room in a mock turtleneck. Things were bad.

Dr. C. said that I had HELLP Syndrome, which was very serious, and the only way to “cure” it was to deliver the babies and placenta. I looked him calmly in the face, gave a half-laugh and said, “Well that’s not good!” I thought he meant we’d have to deliver early and they’d be premature.

He kept telling us how serious the disease was, and finally they said that they would leave us alone and give us some time. That confused me. When they left, I finally looked at B and it hit me – they want to take our babies now! Oh my gosh, that couldn’t be possible – it didn’t make any sense at all! The doctors came back in and I started arguing. Actually, those who know me would expect me to argue. But it was more like I was pleading, grasping at straws.

I was just 19w2d at this point. I asked them to please just keep me here in the hospital for a few weeks, I promised I’d be a good patient! Dr. C. explained that my liver and kidneys were shutting down. He tried to be gentle. He tried to be soft with his words. But we weren't getting it. I just kept shaking my head back and forth. I would do what it took to save these babies. I remember thinking, "Hey! You say my liver's not working - but isn't that what dialysis is for?!" There has got to be something we can do!

Finally Dr. C. said: “You’re dying. Your organs are shutting down. You will not live five weeks." In other words - "You will not live long enough to give your babies a chance.”

It didn’t make sense, I had just happened to have an appointment that day. There had been no signs or symptoms! B and I weren’t buying it. “What would have happened if we hadn’t happened to go to the OB today?” B asked. Dr. C. responded: “Within 48 hours she would have seized or hemorrhaged.” When it strikes early, it progresses quickly. He said: “There is nothing you can do.”

Moving on to practicalities, I then tried to get them to let me go to work the next day and get my files in order. “I’ll come back tomorrow!” I promised. They just shook their heads at me. Then I tried to convince them to do a c-section. The thought of having to deliver terrified me. Labor had always terrified me anways, and I could not experience that, go through that, knowing what would be the result. But a c section was dangerous considering my propensity to bleed and hemorrhage, and it could potentially scar my uterus.

They left us alone again. It was probably 1:00 in the morning by now. And I just – I don’t know what happened. I didn’t freak out, I don’t think. I remember crying, but I wasn’t hysterical. I was just so tired. I just wanted to curl up with B. They kept asking us if they could call anyone. “No, no.” we said. “Its just us.” Why would anyone want to come in town for this? But I did call my mom (who of course promptly collected my sister and began the 3 hour drive). All I said was: “Mamma, I’m sick. And they want to induce me. I've gotta go." After my call earlier that day, she must have been so confused.

Finally the doctors came back in. They must have been able to tell we’d finally been defeated. I climbed back in bed and got under the covers. And they began the magnesium drip to try to prevent a seizure. They put me in compression stockings to prevent a blood clot. And they gave me drugs to induce labor. And the wait began.

My blood pressure was spiking dangerously. There were issues with my pulse and oxygen levels. I wasn’t allowed any food or liquids. The magnesium made me weak and I wasn’t allowed out of bed. My red blood cell count was dropping and I was severely anemic. They were worried about a pulmonary embolism, and brought in an x-ray machine to look at my lungs. Whatever was going on with my kidneys and liver. And something about my heart and calcium levels? Who knows. . .

The doctors didn’t see any chance of an epidural because my platelets were so low. No one had told me this. They offered me demerol for the pain, but it made me nauseous. Finally, with lots of steroids, my platelets rose enough that the anesthesiologist agreed to an epidural.

And B just sat by my side and kept hitting that epi button. Just kept trying to make it all go away.

Let's start at the very beginning

On A.pril 30, 2005, I married my best friend, B. Cliché, but true. Together with our two puppies (they will be “puppies” no matter how old they become), we made a small but happy family. We worked on our careers and setting up our home. We learned to love and lean on each other, and became a perfect team.

In January 2007 we started working on expanding our little family. Finally, after 20 months, and IUI plus injectibles, we found out I was pregnant with twins – Baby Boy A and Baby Girl B. We were so overwhelmed: it was perfect. Even those dreams we didn’t know we had came true.

Or so we thought. On Nov.ember 10, 2008, after a seemingly normal OB appointment, I was sent to the hospital and diagnosed with severe HELLP Syndrome and preeclampsia. At only 19 weeks 2 days, it was a death sentence: for the babies, and possibly for me. On Nov.ember 12, 2008, at just 19 weeks 4 days, our precious babies were born. They were too small to survive, but so beautiful and perfect.

We will never be the same. And we’re trying to figure out what has been so aptly referred to as our “new normal.”

So why start a blog? Why now, after having already faced infertility? After already experiencing the loss of our babies?

Because it is only now, after living through the worst days of our lives, that I fully appreciate the power of relationships formed with virtual strangers based on common experiences. I always thought it was slightly ridiculous to search for friends online. I have a better husband than I deserve; we have wonderful, loving families and caring friends. But I also happened to be a member - a rather inactive and not very well known member - of a few message boards. And those women did for us what few others could do, or dared to do.

These virtual strangers told me: “You’re so strong” - and I believed it, and gained strength. I found others who lost their babies and was deeply saddened, but also reassured to know that I wasn't alone. And I gained hope reading about a pre-e survivor who is pregnant again. These beatutiful women provided comfort as they cried with us for our sweet "babies;" as they called me a "mom." And these women made us realize that we can never say, "No one cares" or "No one understands."

I would never have made it through the past weeks and months without the communities of women who have been through or are going through infertility, multiple pregnancies, preeclampsia and HELLP, pregnancy loss . . .

So, I’m blogging for myself, of course. But also because we need the continued strength and support of these strangers we now consider friends. And because maybe, just maybe, reading our story might also help someone else feel slightly less alone.