Hey Jude – Why the Truth Matters

Dear Jude,

In one month, you’ll turn three. Three-years-old. I remember Lillianne’s third birthday party. It was at the park, on the playground. Eilie was only just four-months-old and just hung on to whoever was holding her like a sweet little koala nugget. Lillianne was so cute. She wore a blue dress with white polka dots and her little yellow “heeled” sandals. We set up tables and even though it was 9:00 that June morning, it was swelteringly hot. Lillianne laughed and ran around, sliding and swinging. She didn’t even care that her friends weren’t there yet; if you’d have been there, you’d have been a year and a half and no doubt, hot on her heels, sliding and swinging a few steps behind her with shouts of, “Yee-yan,” because you couldn’t say Lillianne.

By now, those wobbly steps and funny baby talks would’ve turned into running at full tilt and chattering in full sentences…we’d know what your favorite foods and colors and characters are. We’d have fussed at you for rule-breaking, worried if we were raising you “okay”, thought about your future…all of the things parents do. I’d be planning your birthday party, of course, and, of course, complaining about how “hard” it is to do things during the holidays.

 

The reality is that I’m doing none of those things. I’m expecting your baby brother or sister to be delivered at 36 weeks and 5 days in three weeks and three days (but who’s counting?) on December 21. I’m anxiously anticipating the arrival of your last sibling five days before your birthday.

The day before yesterday, Mystery Baby turned 33 weeks; for you, 33 weeks was the last day of your life with us. We only had you with us for 33 weeks. If I’d known I had to form a lifetime of memories in 33 weeks, I wonder how much I’d have done differently?

 

Yesterday, you’d have been 35 months. We went to Atlanta over the holiday weekend to get Mystery Baby’s little animal from the Georgia Aquarium, an accidental tradition that now means so much. Your Jude Whale, by the way, is much loved and is passed around by your sisters. We got your last little sibling a Harbor Seal. I meant to get a sea lion, but oh well. It’s a cute and soft little thing, and I think Mystery Baby will like it. You’d have loved Jude Whale. It’s kind of ironic that your little whale was pure white, completely innocent and angelic, like you. I always think of you when I see the belugas now. They’re so docile and gentle and ethereal, like you.

I digress. Saturday night, I had a hard time going to sleep. I felt unwell. It was probably fatigue or just un-actualized anxiety. Thirty-three weeks. I had a few cramps and mentally plotted exactly what we’d do if I went into labor or if there was an emergency. Thankfully, there wasn’t.

I woke up at 4 a.m. and thought about the night we lost you. I thought about the things that happened and about how recently, I’ve read about other moms whose babies were having decels and other issues like you were. Those babies were delivered, and those babies lived. Your dad and I have assuaged our grief over and over by telling ourselves that something else might have been wrong. I’ve consoled myself with the idea that you at least were in a safe, warm place full of love when your life left this Earth. But I do wonder…and wonder…and wonder…time and time again, for nearly three years now, what if. If they’d have delivered you, would you have lived? There are plenty of pre-term babies born every day who are sustained in NICUs and who live as perfectly healthy and happy children.

Being the skeptic that I am, I wonder and continue to wonder if someone really knows what happened or who has an idea of what happened, and they’re not saying because they’d rather protect people within the institution (Providence Hospital in Mobile, AL) or the institution itself. The thing is, I’m well outside the statute of limitations for any legal action, and honestly, I don’t want anyone’s money. There is on amount of money on this Earth that can possibly make up for you not being here.

The reality is that I just want to know everything. I want to know why if there’s a why. I want to know how if someone knows how. I want to know if someone made a mistake. I want to hear, “I’m sorry,” if they did. I want to know that because of you, someone has changed everything about the way they practice medicine and has made the right decision and has saved so many baby’s lives. I’d like to know that. I just want to know the truth, whatever it is, because I’d like to think it would take some of the burden from my grief.

 

Yesterday, one month before you turned three, we drove home from Atlanta. Having slept poorly, I was tired and uncharacteristically emotional. Irrationally, I engaged your dad in a lengthy conversation about past pains that really don’t impact our marriage now. After all, when better to trap someone in an emotional argument about the past than on a four-and-a-half hour car ride.

I cried three times yesterday. Once was in a Hardee’s bathroom (we’ll call this a “low point”), once at home while I was unpacking. We’ll call this a “revelation moment” because it was when I took my Jude Bear (the one I got at the hospital nearly three years ago when I lost you) out of my suitcase that I started crying all over again. It’s also when it became clear that the real reason I was upset was because of you. It’s because I miss you. I love you so much, and I miss you, and I really just want some kind of closure. I just want to know the truth about what happened. I realize no one can assure me that your outcome would or wouldn’t have been different had the doctor read the ultrasound correctly; had she decided to deliver; had they rushed us straight to the Children’s & Women’s hospital with the NICU, etc. However, I feel someone can tell us if—in hindsight, they made a mistake. They made a bad call. They weren’t as attentive as they should have been. I have no idea. Did they do everything correctly?

I don’t want someone to blame because that won’t change anything. I just want closure. Is that too much to ask? There’s that line that goes, “You want the truth? You can’t handle the truth!” I can handle the truth. I don’t think it’s fair for me to have anything but the truth.

I think that’s true for all moms who’ve suffered a loss. We deserve the truth. After all, I had a healthy pregnancy with Lillianne. I had a healthy pregnancy with Eilie. Mystery Baby is thus far very healthy. In these final three and a half weeks of me ever being pregnant again, I’m absolutely gripped with anxiety and paranoia because I don’t know what happened or if your passing was ultimately the result of human error (i.e., the choice of inaction) or if it was truly something completely mysterious. Is it normal for babies with decelerations, severe tachycardia and bradycardia to not be delivered immediately? Or rather, more importantly, how much of the heartbeats being read were mine, and how many were yours? What happened?

 

Most days, I’m not a crazy person. Most days, I don’t cry. Most days, I don’t rehash painful topics with your father. Yesterday just wasn’t most days. I’m sorry for days like that, that I have to have days like that. I’m sorry that I hate being pregnant because of the constant anxiety. I mean, don’t get me wrong, I was never a fan of being pregnant, but after losing to “causes unknown”, pregnancy is terrorizing. I’ve visited the hospital three times during this pregnancy for legitimate concerns (of course, everything is fine; everything is always fine) for $125 a pop (shout out to my sponsor, Visa). I’m more afraid of getting a steroid shot and of Mystery Baby needing NICU time than I am excited to meet Mystery Baby in three weeks. Your dad cannot stand when I’m pregnant because I’m so high strung. It’s truly unfortunate. I feel so alone so often because being the one who’s pregnant, I’m literally the only one who can determine if there’s a problem or whatever. I’ve spent six months wondering if this weird little pain in my leg is a blood clot; it’s been checked twice. It’s not. It keeps getting worse, like the anxiety.

 

I wish above all things that I could hug you and tell you in your sweet ear the story about what happened. Instead, I’ll spend the rest of my life wishing. Wishing I knew. Wishing I could hug you. Wishing that I didn’t have two potential realities: the one where you live and the one where we have Eilie because I know that had life not taken the course it did, we wouldn’t have Eilie. The little seeds that made her wouldn’t have been there when and if we ever made baby three. It would be different seeds, a different life. A different kid. A different everything.

But, alas, that’s not this reality. In this reality, you are with me in spirit. I cannot hug you or hold you. We have Eilie, who is so sweet and fun and funny, and we have Mystery Baby, who I hope we get to raise on Earth. I guess we’ll see. As the weeks, days, and hours crawl by, I become more and more anxious and despondent. I lessen my grip on hope just in case it happens again. I do this because I don’t know what happened. That’s the price of not knowing the whole and absolute truth.

I love you and miss you, sweet boy. In my heart, I’m always hugging you and smiling at your laughing eyes. 

Love,

Mommy

Hey Jude — Finding Answers without Solutions: How and Why We Lost You

For most of us becoming a mother forces a change of chemistry; we have a natural urge to protect and to nurture our children. Losing a child –no matter faultless we are—is also transformative and is damaging.

When Jude died, there were no early warning signs. Jude had been active like any health baby in utero should be. I didn’t have gestational diabetes. At our 20-week ultrasound, he measured fantastically. I’d been well on the way to deliver another healthy baby. In the afternoon of December 25, 2014 I noticed Jude wasn’t moving as much. After giving it some time and making every effort in the book to get him to start his usual patter of kicking, we went to the doctor on December 26.

Jude had a good, steady heartbeat; the only reason they checked me in for additional monitoring was because of slight polyhydraminos (25 cm instead of 24; women can have as much as 40-something centimeters of excess amniotic fluid and never know and everything be fine). The fact that our baby hadn’t taken a breath during the half-hour ultrasound that confirmed the poly was (or at least could be) considered not a cause for concern.

At around 6:30 p.m., we were led to the hospital where the baby and I would be monitored overnight, given a steroid shot, and monitored twice a week until we were due. It was all very standard and not a reason to be seriously worried. Within hours, Jude’s heart stopped and he couldn’t be saved.

The doctor on call and our nurses cried; they had no idea what happened. It didn’t make sense, this perfectly healthy woman with a perfectly health pregnancy to have suddenly lost her baby while she was being monitored (no less). Our efforts to save Jude (an emergency C-section) meant staying in the hospital for an additional few days during which time my regular OB came in to see us. She held me and cried with me and expressed her disbelief at our loss.

The months after Jude’s death yielded many sleepless nights of wondering and searching. I laid in bed surfing Safari on my iPhone looking for answers. There were none to be had; each of my suggestions for what might have happened were rejected due to medical evidence that they weren’t viable scenarios.

There was a slight possibility I had a C-Protein deficiency, which could cause blood clots, but even that was proven unlikely when a follow-up blood test (though I was already pregnant again) yielded negative results. Ultimately, I accepted what happened and stopped looking for answers.

 

Finding Answers Part 1: Pieces to the Puzzle

Fast forward to August of 2015. We were getting close to being able to find out the gender of our third baby. I looked at a photo on our refrigerator of Lillianne revealing Jude’s gender at the exact same time one year before and felt very sad. Jude and his sister (yes, our third baby is going to be a girl) are one day apart on their gestational timeline. Jude’s gestational due date was February 12; his C-section was scheduled for February 11, my mom’s birthday. This baby, Ocean Baby, as Lillianne has nicknamed her, is due on February 11; her C-section delivery will be scheduled for February 3. We didn’t intend to have these pregnancies mirror one another or to be so close.

One night as we approached the gender reveal, I decided to Google some right side pain that came and went. It was in the area of my liver, but I didn’t have any signs of liver or gall bladder problems. I searched “causes of polyhydraminos” and high blood pressure was listed as a culprit. I made a note to look more into it the following day and headed to bed.

Halfway down the hall, I remembered that I didn’t have high blood pressure; I have low blood pressure, something I only recently found out because I spent the first couple of weeks of what technically counted as my third pregnancy’s first month in the hospital with pasteurella from a cat bite, and the doctor’s and nurses were concerned. “Is your blood pressure usually really low?” I didn’t have a clue; I called my OB’s office as they’d been the last group of healthcare professionals to monitor my BP and yes –I did have low BP.

I began searching low BP and polyhydraminos and soon found limited yet important research that validated that low blood pressure can be a factor leading to stillbirth.

 

Finding Answers Part II: How Low Blood Pressure Plays a Role in Stillbirth

The more I researched, the more convinced I became that my low BP was a critical factor in Jude’s death. Australian researcher Jane Warland has done some of the more recent studies that shows a relationship between a patient’s low or borderline low diastolic pressure and stillbirth. Warland’s studies remove systolic pressure as an indicator of risk of stillbirth.

Specifically, Warland’s studies show that stillbirth is more likely among women with “borderline” low pressure, which is diastolic pressure between 60 and 70; anything lower is considered hypotensive or extremely hypotensive. Warland also conducts a mean arterial pressure (MAP) calculation in one of her studies that shows that a MAP of 83 or less has a much higher likelihood of an occurrence of stillbirth.

Unlike a typical MAP, Warland’s MAP places double emphasis on the diastolic pressure. Warland’s MAP is calculated as thus: [(2x diastolic) + systolic] / 3. Per an article by Warland, a MAP of less than 83 carries “almost double the risk of stillbirth.”

It took a week and $165 to get my medical records from my entire hospitalization with Jude. I recovered my BPs from my pregnancy with Lillianne as well from the doctor’s office. I contacted Warland. While she didn’t respond to my inquiry regarding my MAPs, all of which were lower than 83 (the highest was 81; the lowest was 64), she did state that the rationale for assuming a borderline woman was at a higher risk is because “I THINK that this is probably related to what happens during sleep. The woman who has borderline BP during the day probably has a significant drop when she sleeps where as if it is already low during the day, it physical can’t actually drop much lower during sleep.”

While I understand this logic, I also tend to think that having a low BP can be problematic given that the issue with having low BP is that there’s not enough pressure to push nutrient-rich oxygenated blood through the placenta and to the baby.

I do concur with Warland in that there are –and must be—a variety of factors present for low BP to be a contributor to stillbirth. Warland strongly believes that back sleeping versus left side sleeping can be detrimental particularly if the woman already has low BP. Importantly, in a follow-up communication, Warland stated, “So, in my research women with borderline BP were at twice the risk. Let’s say the background risk for stillbirth is 1:100; this means that if your BP is borderline, your risk would be 1:50. That still means that 49 of 50 women with borderline BP are going to have a perfectly happy baby. Similarly with sleeping on your back, the risk for stillbirth is approximately doubled. That still means 49 of 50 mums who lie on their back will get away with doing that. This is where the triple risk model comes in as it shows what might happen with a number of converging risk factors and a vulnerable baby.”

What I infer this to mean is that a stillbirth with variables related to low BP is the perfect storm. What I also interpret this to mean is that if you can try to address one or more of those variables, it could make a difference in fetal outcomes.

 

A Medical Theory of What Happened to Jude

Looking at my BPs with Lillianne and those with Jude, Lillianne should have been the baby at a double risk of stillbirth as all of my BPs with her were borderline. While Warland said, “I don’t think we have any evidence that less exercise puts you at risk,” I disagree. If a pregnant woman with high BP is discouraged from exercise because it elevates her pressure, than a woman with low BP should exercise to keep her blood moving. When I was expecting Lillianne, more out of vanity than anything, I ran or walked 5 to 7 days a week. In the third trimester, when running with the extra weight became harder, I started doing leg lifts with ankle weights to strengthen my muscles. I did this before bed every night for the majority of the third trimester.

With Jude, I’d never gotten back into shape; I walked some at the beginning of the pregnancy but after daylights savings time and when it got cold, I more or less stopped. I also started working more often at night, which meant I sat at a desk to work during the day and I sat to work at night. I was more or less sedentary. My BPs were what Warland’s research would classify as “hypotensive” or “extreme hypotensive”.

During my pregnancy with Jude, I wasn’t concerned about fitness. I also probably rolled onto my back during sleep more often than I should have; I’d been lulled into a false sense of security by the fact that many pregnancy advisories are overdramatized. For me, back sleeping during pregnancy is much more comfortable, so it happened sometimes. Whether or not that was a factor, we’ll never know.

My theory, which my high-risk specialist said had merit, is that Jude suffered from placental insufficiency and then failure. Placental insufficiency occurs during the late second and early third trimester. Typically, babies who suffer from placental insufficiency are small. Jude was born at a healthy 4 lb 2 oz; however, they don’t have to be (small).

I speculate that my low BP combined with other factors led to a diminished supply of oxygenated blood being pushed through the placenta over the course of several weeks. On December 25, Jude wasn’t moving as much; the following day, I was diagnosed with acute polyhydraminos and Jude didn’t take a breath on ultrasound.

Without oxygen, the brain cannot grow; with enough oxygen deprivation, the brain dies. If Jude had suffered from placental insufficiency, then this would explain why he still have a steady heartbeat when we went in for monitoring; it would also explain the slight polyhydraminos; he was neurologically no longer capable of breathing in the amniotic fluid critical for his development and survival. This is why, too, then, that within hours of being checked in for monitoring, Jude’s heart stopped.

 

Significance

Of course, this is all theory; even if we were able to prove beyond the shadow of a doubt that this is how Jude died, it would change nothing for my pregnancy with Jude’s little sister or any of his future siblings. Placental insufficiency isn’t visible; it’s only evident when the baby starts to show signs of troubled development.

No doctor is going to put a woman with low BP –even with BP as low as mine (my most recent was 80/50) on medication to raise BP.

Additionally, had I not had a loss, even if I presented this information to my doctors, they probably wouldn’t be very concerned as I don’t have any “trouble” signs of low BP. I don’t faint or get dizzy or have trouble concentrating. I do get headaches easily, and lately, I’ve noticed some tingling in my legs (occasionally) when I sit to work, but there’s no indication that being hypotensive causes me any distress. That’s not to say that it doesn’t; my BPs are definitely lower during pregnancy than normal.

So, all that we are doing is additional monitoring; I’m trying to walk at least 5 days a week, and I’ve started wearing compression socks to bed to keep my blood flow up at night. As I told my doctor, I realize that most of this is psychological; it helps me to feel like I’m in some modicum of control even though I recognize the reality of this predicament.

I allow myself to believe that there is nothing I could have done to help Jude; even if I’d been armed with more knowledge at the time, it’s highly likely we’d have had the same tragic and traumatic outcome. This, at the very least, means that I don’t blame myself or anyone else for what happened. On the other hand, it also means that I have no control over what happens with Ocean Baby, Jude’s sister. It’s a catch-22 of sorts because nothing changes…only the amount of knowledge that one has and that we now have a prospective theory of what happened to Jude.

Today marks 10 months since we lost Jude. He would have been 10 months old today. I don’t dwell on what he would have looked like or anything like that. I do think, sometimes, that he might be walking now and he’d be eating solids and following Lillianne around. I feel his presence all of the time; it’s like he’s just out of reach; he’s a warm shadow who stays close. I know he’s just beyond the veil and I know it will be a long time before I reach him. I know he knows I miss him, and even though I value every second of life here, I also appreciate that every second forward brings us closer.

 

Resource Links:

http://m.aje.oxfordjournals.org/content/153/7/642.full

https://books.google.com/books?id=5uB5DHPHwFwC&pg=PA205&lpg=PA205&dq=jane+warland+low+blood+pressure+stillbirth&source=bl&ots=LRR_f0YZIZ&sig=M4fAoawOtv5k8vONlZ6iLMWG_Q4&hl=en&sa=X&ved=0CCsQ6AEwA2oVChMIn-rP5enfxwIVCRceCh3T7QVk#v=onepage&q=jane%20warland%20low%20blood%20pressure%20stillbirth&f=false

http://www.starlegacyfoundation.org/files/Maternal%20Blood%20Pressure%20in%20Pregnancy%20and%20Stillbirth.PDF

http://starlegacyfoundation.org/wp-content/uploads/2012/09/Does-low-blood-pressure-increase-the-risk-of-stillbirth.pdf

http://www.biomedcentral.com/1471-2393/12/S1/A9

http://www.pubfacts.com/author/Jane+Warland

http://starlegacyfoundation.org/published-research/

http://lib.ajaums.ac.ir/booklist/American%20Journal%20of%20Obstetrics%20&%20Gynecology%20(%20AJOG%20)-Dec05.pdf