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. ;)

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.