A Good Doctor Appointment (Could it Be?)

Okay, so I am apparently not ready to let go of this blog quite yet. I wrote this post in my new blog, but realized before I hit 'publish' that I don't want to get too technical in that blog - I need it to be a place of healing, and cold, hard medical facts are not what I would call healing. Because I know I have followers here who may want to know about hyper-coiling, I will post this information here instead.

One note before you read on: I cover this in detail in my new blog, but I recently had a 10-week miscarriage. Yeah, I know. Our rainbow baby didn't make it. We're devastated. But...we are staying strong. We are going to try again. This is not the end.

It's not something I thought I would ever be able to say again, but there it is in the title, so it must be true. A GOOD doctor appointment!

Today was our Maternal Fetal Medicine (MFM) specialist appointment. It was scheduled at our post-birth follow-up around 8 months ago, so we have been waiting a LONG time for this. I really did my homework with Haven's cause of death, so I was confident in how I felt a future pregnancy should be managed. I knew that there was very little research out there regarding hyper-coiling of the umbilical cord (also called hyper-spiraling or torsion), and I was concerned that, due to the lack of research, a future pregnancy might be treated as "low risk."

It turns out that my apprehension was unfounded. The specialist was compassionate, but very to the point and knowledgeable. I am going to share the details here, in case another mama comes looking for this kind of information someday and it can be helpful. Or, if you want to know about it just 'cause, you are welcome to read on too!

Haven

• We were surprised to find out that, not only was Haven's cord abnormal, it looks like her placenta had also been abnormal. Excess growth of blood vessels in the placenta indicated that not enough oxygen had been getting through, so it was trying to overcompensate. This may have caused Haven to be hyperactive, which may have caused the hyper-coiling. This is a little speculative because there is very little study on the subject, but it would explain a whole lot. They can't tell us why the placenta wasn't getting enough oxygen in the first place. However, they feel this was likely an isolated case.

• She also mentioned that there were "fibrous kinks" in the cord, which wasn't really explained before. I am thinking these probably came from the last few times Haven switched sides in my belly. I had a bad feeling about the last turn she made, though I couldn't explain it. Now I think I had some kind of intuition that something was wrong (why can't intuition scream instead of whisper?)

• In my bloodwork before delivery, they discovered that my Protein S levels were low. This has to do with how your blood clots. The specialist feels that it is probably just a normal variation, but I will receive further testing in a few weeks. There seems to be a correlation in a lot of these cases between clotting issues and coiling, so I am eager to have this testing done (it may not be cause and effect, but two factors working together in a negative way).

Recent Miscarriage

• This is felt to be completely unrelated to what happened with Haven (as we already guessed).

• We may decide to use baby asparin leading up to conception and after the first trimester next time. There are thought to be benefits in prevention of various placental issues with its use.

Next Pregnancy

• Like the OB said, there is no reason we can't try again as soon as we feel ready. We will likely wait until I can be tested for the clotting issue in case the result is positive (it takes a month for results to come back).

• The specialist and the pathologist felt that, due to me not having any underlying risk factors (hypertension, diabetes, thrombophilia, etc.) the risk of recurrence was <1%. Now, with the statistical unlikelihood of what happened to Haven, I take all numbers with a truckload of salt, thankyouverymuch, but I am going to try and live in the >99%.

• Like with my recent pregnancy, I will begin seeing my OB as soon as I get a positive test.

• Between 10-12 weeks, I'll have another MFM appointment to ensure all is developing okay.

• They will do an 8-10 week ultrasound to date the pregnancy and assess for viability, then one at 18-20 for the anatomy scan, where they will do extra imaging to assess the blood flow from me to the baby, so they can see if anything looks abnormal. Assuming all is okay, I will start having biweekly scans at 28 weeks, then weekly scans at 34 weeks until delivery.

• I will be induced at 39 weeks unless there are factors that indicate we should deliver sooner (or if I am an anxious and emotional basket case and tests indicate the baby is okay and ready). We'll do an amniocentesis to make sure baby's lungs are okay before proceeding.

• Hopefully, we will finally get our "take-home baby." I'm daring to dream.

Now

Physically, I am feeling pretty good, though my hormones are bringing a surge of anxiety as they drop. However, my hormone levels seem to be dropping in a healthy way (hcg was only 130 on Monday!) Our OB will follow us until the numbers reach zero.

I spoke to our OB today when I called for my blood results, and she asked how I was doing. I kind of brushed it off, but she really wanted to know. She said "I am reaching through the phone to give you a hug! I want to see you with a big, beautiful belly!" I smiled as if she could see me and said, "I really want to see me that way too. I hope it happens." It is nice to know that we have such a supportive doctor.

That's it. Consider yourself updated. ;)

Breakfast Bomb

I usually take it for granted that our little community of family and friends and coworkers were all aware and sensitive when Haven died. Today I got a taste of someone who didn't know and who wasn't sensitive.

We were at the window at a Tim Horton's drive through to get some breakfast and tea when Danny recognized one of the ladies working inside (an old coworker). I smiled at her. 

"Oh heyyyy," she said, popping her head around the woman serving us, "listen, did you have your baby?" Silence reigned for a few seconds until Danny said, "yeah, we did, but unfortunately she, uh, she didn't make it." The lady dramatically covered her mouth, "oh, I'm sooo sorry!" She stepped away from the window and I thought that was that.

Nope.

She popped back into the window: "were you full-term?"

Danny: yeah.

Lady: "oh my, you don't think about that happening. What happened?"

Danny briefly explained.

"Oh, that's terrible. It must have been so hard." She popped away again, and the other lady in the window (a total stranger!) asked, "was it a boy or girl?" 

Danny answered, but I was just staring off into space at this point, barely believing this was happening.

The old coworker popped back into the window and asked in a conspiratorial tone, "I hope it doesn't sound nosy, but are you guys going to try again?"

I just sat there in shock while Danny said, "uh, we're hoping to, yeah." 

"Oh, that's good." Other random lady chimes in, "hopefully it'll work out this time."

I completely broke down by the time he got me to work. I understand not knowing, but a response to this situation needs to end at "I'm so sorry" and nothing else. I am still in shock that someone who barely knows my husband AND a complete stranger could go on such a nosy tear of questions immediately after finding out we lost our child.

Now I need to somehow let this go and focus on work... I am in disbelief. What is wrong with people?

Invisible Parents, the Sequel

There is a parental child benefit that all parents in Newfoundland receive upon the birth of their child. It also applies to parents whose child was stillborn. To be honest, I wasn't sure at first that I wanted it. I felt a little sleazy collecting money when my daughter had died and I didn't have any child-related costs. But I realized quickly that funerals and headstones and all of those things cost money, and they are not covered in any way when your child is stillborn (my insurance booklet very "tactfully" says that my coverage for a dependent's life insurance is only for children "from live birth"). So every expense has been out of pocket. (It turned out that, thanks to the generosity of our friends, family, and coworkers, we were able to cover all expenses without going into debt.)

Filling out the application was emotional for me. You have to tick a box saying that your child was stillborn, and the form asks for the child's name, but it is "not required if you are applying as a result of a stillbirth." I felt like the form was screaming, "YOUR BABY IS DEAD AND SHE DOESN'T MATTER AS MUCH AS OTHER BABIES!" For the rest of our lives, we will have to fight for the legitimacy of our parenthood to our daughter. The fact is that many won't view her as a person and will not think our grief and acknowledgement of her as our daughter is justified. So...I filled her name out anyway. Small victories.

We completed the application and mailed it in with all relevant information and additional forms, only to receive a letter in the mail saying that our application could not be processed because we needed to include a stillbirth registration letter. What? No one told us that we needed one or how to get it, and the application form did not mention it. Stillborn babies don't get birth or death certificates. All I had was a letter from the funeral home confirming that they held a service for Haven. So I had to call that office back to find out what they needed and how to get it, then I had to call Vital Statistics in order to request it.

When I asked why I hadn't been told anything about it, the lady said, "well, I think because it's a hard thing to talk about with parents." I said, "well, it's a whole lot easier than putting parents through this process!" Having to rehash our story with strangers over the phone is one of the most stressful and painful things that I have had to do, and it's something I have had to do more often than you might think. Honestly, I don't give two craps how uncomfortable our situation is for someone else to deal with. They aren't the ones who lost their only child, so they can, quite frankly, suck it up.

This pissed me off, but I restrained myself. After all, it wasn't that lady's fault that the system is broken.

At least there is a happy ending to this story. Or there will be. A local blogger who lost her daughter in a similar way to us (Being Everlee's Mom) contacted the government about this issue and they are now working on a way to streamline the process to spare parents from having to jump through hoops in order to have their children recognized. I know that a lot of families will benefit from such a change. I guess it's just one change at a time, one courageous parent's voice at a time, that will make stillbirth and parents of stillborn babies visible.

Invisible Parents

I am still surprised every time something happens to remind me of just how invisible we are as parents of a stillborn baby. I found out recently that a Public Health Nurse is supposed to visit all new moms at least two or three times, not only to make sure the baby is thriving and feeding, etc., but to make sure the mom is coping alright with all of the post-birth hormones, and specifically to make sure she is not slipping into postpartum depression. But for me, and for so many other moms like me, there was no phone call. No visit.

I thought at first that I must have missed the call or there was some mistake, but when I mentioned it to my therapist, she confirmed that it is not standard practice to check up on bereaved moms. She thought maybe it was because the hospital recommends therapy to the parents, or they might assume that a parent wanting support will contact someone for support. The problem is, when you are the parent of a stillborn baby, it is agonizing to make calls for any reason that requires you to talk about your loss. Believe me, after four calls to EI, I never wanted to use the phone again.

I think it is a poor excuse to say that no one really knows how to handle this kind of loss. Doesn't the medical community owe it to bereaved mothers to give them the same support that everyone else gets? Particularly because mothers of stillborn babies are at a much higher risk for postpartum depression, PTSD, anxiety, etc.

Dr. Ruta Nonacs, discussing miscarriage in her book A Deeper Shade of Blue, says "Experiencing a stillbirth or neonatal death probably puts you at an even higher risk for depression; one study indicated that a mother's risk for depression after stillbirth is about seven times higher than a woman who has a live birth." And another study (click here) confirms that link.

So why are we ignored?

My husband and I have a large network of friends and family who have supported us through this tragedy, but so many other couples don't have that. Even I, with all of the support and understanding that I have been gifted with, feel let down.

I hope that parents like us continue to speak out about their experiences and let the medical community know that we should not be ignored. We are still moms and dads, and we still need support. That is why I plan to contact Eastern Health about our experience. I will update here about any responses I receive.

The Real World Approaches

In Canada, you would normally receive a full, paid year off from work (up to 55% of your normal earnings) if your baby is born alive and well. You still receive the pregnancy/maternity leave portion of your Employment Insurance when you deliver a stillborn child due to the physical recovery and time for grieving. That means 15 paid weeks, and two unpaid weeks. Your employer must give you your job back, or an equivalent job with equivalent compensation. Well, I am about a month away from the end of my pregnancy leave, and I am starting to think about reintegration into The Real World. I have been in a safe bubble of sorts; I've been able to choose the people I want to be around, I have been able to focus on physical recovery and grieving, and I have been able to start each day at my own pace. That will change soon, and I am afraid.

I am afraid of strangers' reactions, since I have such a public job. The more I read forum posts and pieces of people's stories, the more I realize that there are a LOT of people out there who don't understand stillbirth and don't ascribe personhood to stillborn babies. Therefore, they don't think a parent is justified in mourning as though their baby breathed on the outside, or in talking about them the same way as they would any other child they bore. It's ridiculous, frankly. There are babies born much earlier than the point where Haven died, and if they were to spend even a few hours breathing on the outside, even with assistance, a lot of people would think of those babies more as people than they would my daughter, because she never breathed on the outside. I am afraid of meeting these people because I am afraid I'll either lose my mind and yell and them, or that I will be dumbstruck, and they will take my silence as agreement or some sort of proof that they are right.

I am afraid that I won't be able to keep up with things anymore. My job requires me to be "on" all the time, and to remember things. To keep things running smoothly. An administration job is not the kind where you can just shut off your mind. I was always sharp, remembered the little things, did things without being asked or reminded. And now, here I am. I still have "mommy brain" from all the hormones (I've heard this might never go away), my grief is horribly distracting, my focus on trying to conceive (TTC) is distracting, my thoughts about how my husband is doing are distracting...there really isn't a lot of room left for sharp thinking. I hope that I am able to flip a switch and just turn the focus onto my job once I'm back, but I'm nervous.

I am afraid that, if I can't conceive before I get back to work, the exhaustion of full-time work will make it more difficult. I'm afraid that if I can't time conception right, I'll end up having to work next year during the most busy and stressful time at work (April and May) and put my baby at risk. I'm already afraid that if I DO conceive this cycle or next, that even those few months at work will be dangerous for my baby due to my stress and anxiety. Basically, I'm afraid of stress.

I am afraid that going back to work will make all of this seem more real somehow. Like it never happened. I should have been returning in February of 2015 after an exhausting and joyful year of nursing my daughter and watching her grow. Now I am returning early, empty-handed and exposed.

I am afraid that people will think that going back to work means I'm okay.

Sigh. I'm just afraid.

Autopsy Results: Hyper-Coiled Cord

Two weeks ago, we were shocked to find out that Haven's autopsy/pathology report turned up a cause of death. From the day she died and onward, we had prepared ourselves to to hear that they couldn't find a cause, because, in most cases like ours, they don't find one. All of the nurses and doctors had told us that we would likely never know.

The report said that she was a perfect, healthy baby girl (which we knew), but that her cord was abnormal. It was hyper-coiled, meaning that the cord had way too many coils in it. The nurses didn't catch it when they delivered her, and even specifically said that it looked normal. The coiling doesn't seem to have caused a problem until the end, because she was a normal weight and had developed perfectly. There were areas of low Wharton's jelly (meaning the veins were less protected), and there was clotting, swelling, and fibroids in the cord, so it looks like at some point (probably in the last few days), blood started being restricted, then was cut off. The hyperactivity the night before we found out she was gone was probably her dying due to lack of oxygen. My theory is that, when she changed sides of my belly about a week before, that put her into a position where she ended up leaning on the cord, cutting off blood flow. I had a bad feeling about it at the time, but my doctor didn't seem concerned. And for any normal pregnancy, it wouldn't have been cause for concern. Hindsight is 20/20.

Research indicates that mothers tend to produce the same types of cords with subsequent babies, but it's not guaranteed. And another cord like it would not necessarily be fatal, though it would be dangerous. There is no prevention of hyper-coiling; it happens very early on. There are only two theories: one is that it is caused by the embryonic/fetal movements when the cord is developing, or that it is caused by uneven blood flow. Diabetics and cocaine users are more likely to have this happen, but I am neither of those things. All I can really do is keep in good health and hope for the best the next time around. There is some indication that they can look for it on ultrasound and test blood flow with cord Doppler testing, so I am hopeful that we'll have luck with that. I also hope that we will be very closely monitored. I plan to go off work much earlier the next time so that I can focus on being healthy and rested, and so I can more carefully monitor the baby myself.

We will be seeing a specialist in a few months to go over the report in more detail and to learn about our odds of recurrence, as well as what the plan will be the next time I am pregnant. It may be up to six months until then. I hate how slowly the medical world moves sometimes.

I can write all of that in such a clinical way because I'm still a little in shock over it. That's why I waited two weeks to share it here. Even our OB was very surprised by the report, as it didn't seem like we would ever know.

We really thought it would make us feel better to know why she died. I think it did, in a way, because it has given closure, and will continue to do so. I don't regret the autopsy, but it was very emotional hearing the details at the doctor's office. We were shocked, first and foremost, but hearing the details and picturing our poor girl being in such trouble without us knowing...that hurt. Knowing she was perfect but just terribly unlucky...I don't know if that makes us feel better or worse. Or both. Grief over losing a child causes the most paradoxical and illogical thoughts I have ever experienced.

We left the office and drove straight to the grocery and liquor stores, where we bought a lot of alcohol and food, then proceeded to eat our faces off and drink a bottle of wine each. We even bought a pack of smokes (we don't smoke) and had a bunch of those. Was that destructive? Probably. But it did make us feel a little better at the time.

So that's our story. Anyone else have experience with hyper-coiled cords? I'd love to hear your stories and/or to hear of any advice or information you received regarding subsequent pregnancy. It seems fairly rare among causes of stillbirth, so there is not a lot of information out there.

In the Quiet

I am someone who loves quiet and solitude. My husband is the opposite and would be perfectly happy to have the t.v. on all day, or to spend most days with friends. The funny thing is, since Haven I have been craving distraction. I'm afraid to stop and think, because thinking leads to the most painful memories, and to longing, and to guilt, and to self-blame. I suppose trying to distract myself from my grief is not the healthiest thing, but it seems to be the only thing that is helping me hold it together.

Oh, the thoughts I think...

"What if it was something I ate?"

"What if I wasn't sleeping on my left side enough?"

"What if she had been born a few days earlier? Would she still have lived?"

"What if there were signs and I missed them?"

"I was laughing the last time she kicked me - what if that was a warning sign and I laughed?"

"What if I had gone in to the hospital sooner? Maybe her heart would have still been beating!"

"What if I had taken that last week off like I had planned? Maybe if I hadn't been so tired and distracted, I would have noticed something was off!"

"Will they ever find an answer or will I be tortured for the rest of my life wondering?"

The questions just swirl around in my head, and images and mental video play over and over. The look on the nurse's face, then the look on the doctor's face. That sick knowing feeling as we went into the hospital. The fear. The wailing I couldn't hold in. My sweet husband being there by my side through it all, being so brave and so helpful. Holding her and kissing her cold little cheek. The softness of her skin.

I will never forget these things. I take some small comfort from others who have gone down this sad, sad road. They say it becomes easier to bear with time. I really hope they are right. Right now the grief cuts like a knife.

The Worst Day

"I'm sorry, I don't know what to say...there is no...we cannot detect a heartbeat." The doctor looked at me with sad eyes, then at the monitor, then at his feet. 

They wheeled me down to another floor for a second ultrasound. It didn't show anything different. She was still. No whooshing, galloping baby heartbeat came from the machine. My husband began to weep, and grief ripped its way from some dark corner in the center of me and out my mouth, filling the room with a ragged animal wail. It went on and on and I couldn't control it. A part of me had already known. I had known as I waited to be buzzed in at the door to the maternity ward. I knew when the fetal heart monitor was silent, when my belly felt oddly squishy as the nurse felt around for my baby's position. I knew before the first ultrasound and before the second. But I'd hoped....I'd hoped. The bottom fell out of the world. All joy was sucked out of my life in that instant. Colours grayed, music lost its sweetness, and food lost its taste. She was gone, my beautiful baby girl was gone, and so was the person I used to be.

It was just over two weeks ago. It was Valentine's Day and my last day of work before maternity leave. A day of celebration. I finished up some projects for my work replacement, then went for lunch at one of my favourite restaurants with my closest coworkers. I opened a gift: tiny, hot pink ballet shoes, a plush, hooded baby towel, a practical onesie. I oohed and awed. We ate and joked about the baby, talked about what I was looking forward to the most. "Everything," I said, with a shy, crooked smile. I poked at my belly a few times during my meal. Shook it gently from side to side. "You're awfully quiet in there today!" I was glowing. Powerful. Triumphant.

I was also a little uneasy. Was she sleeping longer than usual? Wait...had I for sure felt her move that morning? Or had I only felt Braxton Hick's contractions pushing things around? I went back to work and called my husband. "Don't be worried, but I haven't felt the baby move much today - I think we should go to the hospital, just in case."

Every memory of that day makes me feel physically sick. I hate the me I was on that day. I wish I could shake her and scream at her, "it's too late! She's already gone! You lost her in the night while you were sleeping and you don't even know it yet! How could you not know?" I also envy that me. She was so brilliantly, beautifully, perfectly happy. She was so hopeful. So confident. So alive.

We had been calling our baby "Shrimpy" since the week we found out we were pregnant; my pregnancy book had said that she looked like "an oddly shaped prawn." But her true name we had picked out long before and had kept it secret from all but family. Haven Melody... "safe place" and "music, song." When we found out at 19 weeks that we were indeed having a girl, we were overjoyed. Haven was real, and she was ours. We had imagined our future daughter for years, and now a surprise but welcome pregnancy would give us a chance to start the family we so wanted. We were going to have our longed-for, dreamed-about baby girl. We had joked about so many scenarios over the years, tried to imagine what she would be like. This little person growing inside me already had a personality and a history that she didn't even know about yet.

The third trimester came and we drank the Kool-Aid. Stillbirth was something that happened to other people. Something that didn't happen very often. We had no idea that babies are born still every day and no one ever talks about it. Not your family doctor, not your obstetrician, not your pregnancy book. It's the dirty little secret that is hidden from pregnant women to protect them from worrying. We had no idea that, as first-time parents, we were at a higher risk of it happening to us, even though I had a normal, healthy, "picture perfect" pregnancy (my OB's words). That 50% of the time, parents get no answers, even after an autopsy. That research is scarce, and "stillbirth" is an umbrella term that can mean one of so many scenarios. That it can happen very suddenly, with no warning, and you can go from the heights of happiness to the depths of grief on the turn of a dime. Death can rob you in your sleep.

She's gone. My baby. My hope, my future, my joy.

We are among the "babylost." Parents with empty arms and a hollow ache. Adrift. But she is still in our hearts...our love for her is Haven's Melody.