Confessions of an Anxious Mama: Pregnancy After Loss Edition III

30 weeks: she's weighing in at 3 lb 2 oz and is the estimated size of a cantaloupe.

I feel like this pregnancy is flying by. I didn't think it would entering a Pregnancy After Loss and all that comes with it, but just like that, we are now a few weeks into the third trimester. At the 28 week appointment, we sat down with my doctor, like we have at 7 weeks and at 14 weeks, to plan out what this specific trimester is going to look like for us. We've had the 30,000 foot view of what the pregnancy would look like as a high risk classification in general. As many other high risk mamas who I've come to know and because I've had a cord accident, my doctor plans to always induce as early as 37 to 38 weeks. For us specifically, the reason for that is due to the fact that cord accidents are more likely to happen later in a third trimester when baby is running out of room and you are at risk of having a cord accident again if you have already had one. I'll go into more detail on that below. So when I talk about my anxiety surrounding this pregnancy, yes it partially stems from a third trimester loss from the only pregnancy experience I know, but also from this chance of history repeating itself with another cord accident.

If I'm being completely transparent, I really love being pregnant. I love the basketball belly that sticks out of my clothes. I love when it starts dancing around when she moves. I love when my husband leans down and talks to her just because. I love when my dog rests his head on it. I love after every time I wake up in the middle of the night to relieve my bladder, she starts wiggling around and the lack of sleep I get because I don't want to feel her stop moving. I love feeling her within thirty minutes of having food. I appreciate every pound gained, the swollen legs and feet, the cracked heels. I'm exhausted easily, the pressure of her can be a little uncomfortable when walking and standing, my back doesn't feel so great, there are times I think I just burped up a fire ball, times I feel cranky or overly emotional, but - I love it. I'll take it all, all the time, to be able to have it, as many times as I'm able to have it, because I honestly love every bit of it. However, it is difficult when what you love is encapsulated by risk and fear.

For the majority of my pregnancy, I feel like I have been pretty good to my heart and my mind. I have stayed away from WebMD and all things Google in an active effort for calm and peace, trying to disbar the what if thoughts from my mind. However, since entering the third trimester and becoming closer to that doomsday mark (the 32/33 week point), I kind of accidentally, may have slipped on avoiding the world wide web and what it says about cord accidents. It started out so innocently. A special person in my life did something to garner a naming right for Hudson at a large annual conference for medical professionals and individuals in bereavement care for pregnancy and infant loss. They sent me the speaker information and asked me to look at the different sessions and choose which resonated most. There were two talks specific to stillbirth and so I decided to research the speakers and what their messages are in stillbirth research, and see what they say about cord accidents as well. In doing so, I got a little carried away and before I knew it, I was falling down the rabbit hole. 

I have met a number of other mamas living in this Life after Loss world, but I've only been put in contact with one who experienced a cord accident as well. As she was going through her Pregnancy After Loss, she had told me about the Pregnancy Institute, a non-profit organization lead by OB/GYN Dr. Jason Collins, who is a national leader in cord accident research. Last summer, I read a bunch of his findings and studies, in addition to others out there, but his were the most dedicated to strictly this type of stillbirth cause. Jumping forward to the present, while conducting this recent google search, I came across his name again and found myself re-reading Dr. Collins' research on cord accidents. This time I was reading with a different perspective, honing in on the findings of what it can mean for subsequent pregnancies. My inner Jiminy Cricket was chirping, it was telling me to stop and just let it go, but no. I decided to be an emotional masochist. 

I read the research again and again and again. All things I had read a year earlier, but because I was pregnant again, in the third trimester with this precious child who has restored our hope, clearly that meant I had to read it from this current perspective and all of its emotions. Following the research articles, I then read a blog post summarizing everything in more simple terms. I read through all the comments on the post. I sobbed reading the words of these aching moms, their hearts I know all too well. Some were from the grandmothers writing their accounts of watching their own daughters say goodbye to their babies and having to lay them to rest, how unfair and angry they were that there had to be coffins made that small and why more isn't done to prevent this? I read testimonies of women who have had multiple stillbirths due to cord accidents. I know I should have stopped but I was frozen and my eyes wouldn't stop scrolling. I sobbed with the mere thought of our experience and reliving that again in my mind. Then the panic of oh my God I just can't do this, I can't do this again. When I was pregnant with Hudson, most of the mommy friends I had were having boys as well. We lost Hudson and while it was hard to see any newborn for a very long time (honestly, I had a hard time with it through June of this year, I've just now come to be able to hold and see them), watching all those baby boys enter the world absolutely broke me. This time around, most of my mommy friends are also having little girls and it is just scary to be back here, in the same kind of position. I am terrified of something happening again. I held my belly and rocked back and forth, pretty much just wailing until I couldn't catch a breath and my head felt like it was going to explode from pressure. 

I find it important to share some of his research because we shouldn't be living in the dark about this. It shouldn't be something we fear to hear about. That increases the stigma. We should know our risks and what can happen, what to ask our doctors, what to look for, because maybe then there can be a change. This isn't meant to drive fear into pregnant women, or those thinking about having a baby. We should know these things. Just like we try to take precautions to cancer and knowing our risks for other health-related issues. This information specifically pertains to cord accident deaths.

Essentially, there are various ways the cord can cause a fetal demise. According to Dr. Collins:

"There are many types of umbilical cord issues.  The more common issues include true knots, velamentous or marginal insertions, hyper or hypo coiling, lack of Wharton’s jelly, 2-vessel cords, and compression." 

What is most common is a nuchal cord accident and that is classified in two types. Research states:

"Type A is a wrap that can possibly be undone with movement or delivery of the baby. Type B is a hitch that is impossible for the baby to release. If a type B loop around the neck, ankle, or other body part is pushed off the body, a true knot is formed.

With umbilical cord issues, the factor that determines the risk is the amount of slack available. For this to be determined, the cord location, cord structure, placenta, placental position, cord length, insertion site, and position of the baby must all be evaluated and considered. Short cords have been associated with an increased risk of neurological insults and long cords have been associated with an increased risk of fetal death."

Yes, it is true. There are babies born all the time who have had a cord wrapped around them or are tightly coiled and they live. It is interesting to share though that there are studies taking place to see the impact of cord babies born living, to see if the compression which would have resulted in a decreased blood flow and oxygen in utero had an effect on brain development as the child grows. Some researchers are looking for a link to ADHD and the autism spectrum, as well as other cognitive developmental disabilities. 

The warning signs of cord restriction or compression are as follows:

• There is a link with maternal low blood pressure in the third trimester. 
• There is a link with fetal hiccups.
• There is a link with a slower fetal heart beat. 
• There is a link with both hypoactivity and hyperactivity in the womb. 

His research suggests that most cord accident deaths take place between the hours of 12 am and 6 am, while a mother sleeps. This is when melatonin is produced in the mother's brain, which can cause stress on the uterus. If there is a compression on the cord, the baby may not be able to continue to handle this stress. In addition, a mother's blood pressure will lower while she sleeps which impacts the flow of blood and oxygen through a cord. If there is already distress on the cord due to tight coiling, a wrap or a knot, that is when a fetus is most at risk. If an expecting woman already shows signs of a lower blood pressure, then her blood pressure decreases more when sleeping, if there is any kind of distress on the cord, it increases the chance of fetal demise.

Hudson was a nuchal cord accident type B. It was wrapped three times around his neck, very tightly and he had a very long cord. Because of this, more than likely, he became wrapped early. As he grew and didn't have more room to move, it became more compressed. I fell asleep on May 25 by 10:00 PM and he was kicking me. I got up the next morning in a hurry and didn't feel him before my appointment. This is why I never want to feel Hadley stop moving, especially when I wake up in the middle of the night. The fact that we are doing these sonograms with Hadley weekly would show by this point if her cord was restricted, wrapped, knotted, or compressed - this is one of the things we look for each week at her appointments.

Finally there's the other important piece of information. That when it comes to subsequent pregnancies, it is found that women who have had a cord accident are more likely to have it happen again. But they have not been able to yet conclude why. 

"Work at the Pregnancy Institute has identified that umbilical cord accidents are not random or rare. Women who have had umbilical cord issues with previous pregnancies, have as much as a ten-fold increased risk of umbilical cord issues in future pregnancies. These women need additional monitoring for these concerns."

I scoured but couldn't find any insight into why someone who has had a previous cord accident more at risk of it happening again? I reached out to a research assistant of Dr. Collins who penned a blog post about it to ask about. Within two hours she got back to me. Her response was this:

"Katie – I, too, wish we knew why there was a greater risk of this happening again. There are several theories and a few people studying it – but we don’t know yet. I am hopeful that additional studies and genomics work will give us some answers. I know the anxiety that accompanies this pregnancy after loss – so I also wish you peace and comfort during this time as you await her arrival!" 

So what has that meant for this pregnancy and the remainder of it?

Cord accidents are just one type of fetal death, there are various other causes of stillbirth both known and unknown. What every post-stillbirth, high-risk pregnancy can expect is additional fetal monitoring, appointments and testing. Speaking from our experience and as I've shared a bit about previously, we had a biophysical profile at 9 weeks, then 20 weeks, and starting at 24 weeks, they became weekly. This means a very in depth sonogram, sometimes involving the 3D/4D technology. They watch as she breaths both through her nose and through her mouth, they look at every organ and measure each bone, we look at brain activity. Fluid is measured, placenta is checked, cord is examined. The high risk ultrasound tech doesn't stop until she gets the numbers she needs to see to ensure that everything is the way it should be. Hadley needs to score an 8 on everything and she has done so with each appointment so far. So, being in our third trimester, our plan is that if her score were to ever drop lower, depending on the severity, we have reached the point of her life's viability that my doctor would perform an emergency c-section right away if it were needed. This gives me ease to know that she can be saved if something were to present itself and if we were to catch it. This is also where my paranoia starts to take over. If I don't feel like I felt her enough, I panic and want to grab for the heart monitor right away. It keeps me from sleeping at night if I move and she doesn't move back, which she usually will start moving whenever I wake up and change sides or get up to go to the restroom. I lay there awake until I feel it, if it takes longer, I start to panic. Then I feel her and am at ease, but I'm now wide awake.

To help combat this, I've started a "movement journal" to document the different jabs, kicks and rolls. As discussed above, both hyperactivity and hypoactivity are cited as signs of distress. So you have to think to yourself then what the heck is normal activity? What exactly is too much or too little when people say all the time how each pregnancy, each baby, is different? Now I have this journal and I'll take it to my weekly appointments to review. We can look at her pattern of behavior together along with her biophysical profile stats.

I've made sure that we've established a baseline of my blood pressure. Nurses usually are on high alert to look for an increase in blood pressure, which can be an early sign of preeclampsia, but they don't all necessarily know that a decrease in blood pressure can be an indication of anything. I had to ask for that. Now we make sure that we are looking at heightened and lowered blood pressure by the week. So far, so good.

At 32 weeks, we have it in the plan to start twice a week appointments if we feel it is needed. One appointment will be a non-stress test, the other will be the biophysical profile sono, every week. Each appointment will end with an assessment by my doctor and chance to touch base together. Each hospital varies on when they will induce. My hospital is preferring that patients be induced after 37 weeks, which she said could be 37 weeks and 1 day if we wanted, or we could go closer to 38 weeks. Basically, she said pick your date in that time frame. We have a date decided on, but will talk to her about it next week to confirm that she can schedule us then.

My days are good, I just have moments within those days that can be really hard to get through and/or move on from sometimes when certain thoughts occur. It's hard for me to have this experience of monitoring Hadley so closely and know that if only we had even just one more sonogram with Hudson, maybe things would have been different? Maybe we could have saved him and he could be here too? Why did one of my babies have to die so that I could have the monitoring needed for any others I am to carry? I want to believe that everything will turn out just fine from here on forward but I know the truth is that we don't know that. Never in a million years did I think we'd lose a baby to stillbirth, but we did. What's to say it won't happen again? These are the tough thoughts, the ones that can be paralyzing and make it difficult to move on from. The ones where you scold yourself and say don't you dare go there, but you can't help it because you've already experienced the unimaginable. 

So, because of that, we have to remain hopeful, grateful and pray hard. Each week is a celebration because we are still pregnant, our baby is still alive and we are another 7 days closer to her arrival. 

You may be sick of reading it by now, but sorry. 
Faith over fear has to triumph. 
And so it shall. 

We are hopeful to meet our crying, breathing, wide eyed baby girl in 7 weeks and 2 days.