Saturday, November 19, 2016

An Rh Sensitized Pregnancy

Rh incompatibility has been an issue for me since the first time I got pregnant.

Not surprisingly, I've spent a lot of time researching it. Chances are good, though, that you know little to nothing about it, unless it's an issue that affects you personally as well. Even if it does affect you, you still might not know much. That's not your fault. All of my pregnancy books--and I have a lot of them--gloss over it. Four or five sentences max. All of which can be summed up with "get the RhoGAM and you'll be fine."

The thing is, that's not true. Not for everyone.

Not for me.

Rh Incompatibility: the Basics

Let's back up a bit. What is Rh incompatibility? The Rh (rhesus) factor is essentially an antigen (a type of protein) that occurs on the blood cells of most people. Eighty-five percent of people have this protein, and are thus considered Rh positive. The rest of us (like me) lack this protein, and are considered Rh negative.

For the most part, for most of your life, this is a pretty inconsequential fact. Sure, if you ever need to receive blood, it'll come up, but it's really not a big deal. When it IS a big deal is during pregnancy. Specifically, it's a big deal if the mother has Rh(-) blood and the father has Rh(+) blood. That is what's known as Rh incompatibility. Any baby created in a union like this has at least a 50% chance of also having Rh(+) blood. And that's where the problem lies.

You see, if some of that baby's Rh(+) blood mixes with mom's Rh(-) blood, then it will spark an immune reaction. Mom's blood sees that extra little protein as a threat, and will create antibodies against it. If this happens, it's called becoming Rh sensitized, or isoimmunized.

Now, this is generally not an issue during a first pregnancy. Most of the time, blood mixing will not happen during a first pregnancy. Sometimes, it may happen randomly during the third trimester, but not always, and when it does happen, there's no real way of predicting it. Chances are good, however, that blood mixing will happen at birth. (And contrary to what others might tell you, it'll probably happen no matter how peaceful and gentle the birth is. It just happens. You can't really prevent it.)

Blood mixing is also a possibility during certain types of prenatal testing (such as amniocentesis), or if the mother suffers some sort of abdominal trauma (think a really bad fall, or a car accident). But even if blood mixing does happen, chances are good that her immune response won't be bad enough to endanger the baby during a first pregnancy.

Subsequent pregnancies, though. That's where things get tricky. If mom is isoimmunized and gets pregnant with another Rh(+) baby, then her immune system will see that baby as a threat. Her immune system will ramp up production of those particular antibodies and go on the attack. This can be bad news for the baby, and can even result in the baby's death if the situation is not monitored and treated appropriately.

RhoGAM: the Solution?

Fortunately, there is a way to prevent Rh sensitization. It's a drug commonly known as RhoGAM, and women who are at risk are advised to get a dose of it at around 28 weeks and again within 72 hours of delivery. Women are also supposed to receive it if there is any other possibility of blood mixing--one of the scenarios mentioned above, or if the woman has an abortion or a miscarriage.

Here's what RhoGAM is: purified anti-D antibodies of the sort that the woman's immune system would otherwise produce on its own. Here's what it does: it goes through and essentially cleans up the woman's blood for her. These purified antibodies attack and get rid of the foreign Rh(+) blood before her immune system has a chance to create antibodies of its own. RhoGAM is not a vaccine (although many people erroneously refer to it as a blood-based vaccine), and it doesn't provide long-term protection. Most studies indicate that it is rather effective if it's given within 72 hours or so of blood becoming mixed; some studies say it's effective if given within ten days. But it doesn't stay in your system long-term, which is why it's advised for every at-risk pregnancy; it doesn't matter if you've received RhoGAM in the past.

Like any medication, it's not 100% effective, and furthermore a lot of people wonder about the effectiveness (and necessity) of the 28-week injection, with no proof of definite blood mixing. But that's another issue. The fact of the matter here is that, given appropriately, RhoGAM is generally quite effective, the additional ingredients are relatively benign (sodium chloride, Polysorbate 80, glycine; trace amount of IgA; no HSA, no thimerosal, no other preservatives), and reported reaction rates are relatively low (take that with a grain of salt, of course).

My Background

I did not receive RhoGAM during my first pregnancy, although I did have a dose of it within 72 hours of giving birth, at the advice of my midwife and at the recommendation of my own research.

After my first miscarriage, I learned that I was Rh sensitized.

But wait, I had the RhoGAM! Well, the way I see it, there are three possibilities for what happened:
~It didn't work for me. That would make me part of the reported 0.1-0.2% for whom RhoGAM is ineffective.
~I didn't receive enough of it. RhoGAM is dosed based on an estimate of how much blood mixing happened, and it's possible that they just didn't give me enough of it. With too low of a dose, my body would have had the immune reaction anyway.
~Isoimmunization happened as a result of my miscarriage; after all, I did spot-bleed for more than three days before going into the hospital, and I was there bleeding everywhere for eight hours before anyone thought to give me RhoGAM (and I obviously wasn't in the right state of mind to ask for it).

Anyway, the fact of the matter is that I am indeed Rh sensitized. I've had it confirmed three times since my miscarriage, and while my titer (antibody) levels are low, my body does still maintain them, and has the ability to make more if it feels threatened again.

Like it just might with this new baby.

So after my current care provider once again confirmed my status as Rh sensitized, they sent me to consult with someone from the high risk group. Yes, that's right; after my perfect, easy, low-risk first pregnancy/birth and then two miscarriages, I'm now officially high risk, which means I'm pretty much stuck with a hospital birth. Not my ideal, but it's the smart (and only) option here.

The real question is, what exactly does that mean for this pregnancy?

The Plan

The ideal first step is to find out my actual risk level. Remember how I said earlier that a baby produced by an Rh(-) mother and an Rh(+) father has at least a 50% chance of also being Rh(+)? That means that, potentially, it could have a 50% chance of being Rh(-), in which case all of this is moot. I can go back to being low-risk, no further monitoring needed.

To that end, my doctor wants my husband to have his Rh genotype/phenotype checked. This will determine if he is homozygous for the D antigen (for being Rh[+]), or if he is heterozygous. If he's heterozygeous, then my odds are officially 50/50.

Don't have a clue what that means? Think back to the basic, oversimplified version of human genetics you studied in high school. Remember dominant traits and recessive traits? You can think of this in those terms. Having the D antigen means you are Rh(+); this is the dominant allele. Homozygeous would mean he has two dominant alleles for the D antigen. Heterozygous would mean he has one dominant and one recessive. I have Rh(-) blood; I have two recessive alleles. If my husband is heterozygeous, the baby would definitely receive one recessive from me, but it's 50/50 as to whether it'd receive a dominant or a recessive from my husband; thus, there is a 50% chance of the baby being Rh(+), and a 50% chance of it being Rh(-).

This is a simple blood test that is easily done, and should definitely be covered by insurance. If we find out that he is heterozygeous, then we get into slightly more advanced testing. The next step would be to determine the Rh genotype/phenotype of my unborn baby's blood. This can be accomplished through a test called the cell free fetal DNA (cffDNA) test. It's a completely low-risk, non-invasive test; it finds free-floating fetal DNA in my, the mother's, blood, and uses that to determine whether the baby is Rh(+) or Rh(-).

Unfortunately, this test is still considered "experimental" in our country. Health insurance companies usually refuse to cover it, although my doctor is going to write a letter to mine to try to get pre-approval. After all, it's cheaper than the alternative (amniocentesis can also determine the baby's Rh status, but in my opinion, the risks of amnio outweigh the potential benefits here), and it could ultimately save them a lot of money depending on the results. If insurance still won't pay for it, I could pay out-of-pocket; I was told it costs $400, which isn't too bad in the grand scheme of things.

So what happens if the baby is determined to be Rh(+)? Or if we can't tell, because insurance won't pay for cffDNA and I can't afford it?

Blood tests. Lots and lots of blood tests. I anticipate having to get blood drawn at every single prenatal appointment for the duration of this pregnancy. That way, my doctors can monitor my titers (my antibody levels). If they stay low, then it's all good. If they start to go up, and if they go up past a certain threshold, then I'll have to start getting blood work done in between appointments, every two weeks and maybe eventually every week.

If my antibody levels get too high, they'll start monitoring the baby via ultrasound. Interestingly enough, doctors can look at the blood flow between the brain and the rest of the body to see if baby seems to be at risk for what is essentially anemia. In a case of isoimmunization, like I have, it's referred to as hemolytic disease of the fetus/newborn. Remember that my antibodies in this case can pass through the placenta and attack the baby's blood, destroying blood cells. So the ultrasound can help the doctors determine whether or not the baby is suffering as a result of my high antibody levels. Because if it gets too bad, the baby can die from this.

Isoimmunization is definitely not something to take lightly.

And if it is determined that the baby is suffering? Well, that depends on how far along I am in the pregnancy. One option is a procedure called an intrauterine blood transfusion, which is exactly what it sounds like it is: it's giving the baby a blood transfusion while it's still in my uterus. To do this, they'd use ultrasound to monitor the baby's position while sticking a long, thin needle through my abdomen. The goal is to get the needle into the umbilical cord (near the placenta, where it doesn't move as much), and then to give the baby a blood transfusion. This would help offset the effects of my own immune system's ongoing attack.

Unsurprisingly, there comes a time in pregnancy when this procedure is no longer safe (and that's not to imply that it's ever without risks; it's definitely risky, but the alternative--doing nothing--is worse). My doctor describes it as balancing the risks of the procedure with the risks of prematurity: basically, once the baby hits a certain stage of development, it makes more sense to deliver early than to try to attempt an intrauterine blood transfusion.

Induction. Something I dread, but it's a real possibility in this pregnancy.

I was told that, generally, intrauterine blood transfusions are not performed if the baby is past 34 weeks gestation. In some cases, it might not be possible after 32 weeks; that would require a consultation with a different doctor in a different hospital (they don't have that kind of specialist at the hospital I'm going to), who would do yet another ultrasound to examine the baby's size and placement and determine what's best.

So basically, it's possible I might end up with a premature baby here. I acknowledge that reality even as I fervently maintain my optimism that it won't come to that.


And that's what I'm up against.

To be honest, very little of what the high risk doctor told me at our consultation was actually new information to me. After my first miscarriage, I was devastated and I refused to even entertain the possibility of getting pregnant again for a year and a half. As my grief started to wane (it never has, and never will, go away completely), I began once more to feel the overpowering urge to have another baby. I knew now that I was Rh sensitized, but I didn't fully understand the ramifications of that. And since the Internet is strangely lacking in real information about pregnancy after isoimmunization, I took the initiative and saw a high risk specialist on my own, to find out exactly what an Rh sensitized pregnancy would entail.

I believe in informed consent when it comes to all medical decisions, especially those related to pregnancy, and it seemed irresponsible to jump into a potentially risky situation without knowing any details.

Hopefully, this helps you better understand Rh sensitization, and exactly how it affects pregnancy. It's scary stuff, and I wish that information about it were more readily available. It drives me crazy how much misinformation is out there, getting spread around on blogs and message boards, but hopefully this post can help counter that a little bit.

Sunday, October 16, 2016

Road Trip to Virginia: Days 2 & 3

Evening of Day Three. I think; we're now officially two hours ahead of California time, and my body is oh-so confused about what time it actually is (although I would still much rather handle the time changes gradually like this, rather than have jet lag from moving straight there).

We're approximately halfway there. Three days down, three more to go.

The last two days have been rather slow. To be honest, I had forgotten how boring and, well, desolate some of these long stretches of I-80 can be. Much of Nevada, Utah, and Wyoming are unaccountably dull, especially at this time of year. Everything is dry, the grass is all dead, and there's not really much to see. Maybe we're just driving through the boring parts? I don't know. There were some cool parts. The salt flats are interesting, for a little while. I enjoyed some of the rock formations in Utah. But it seemed like most of what we were passing was endless grassy plains, with occasional softly undulating hills.

It's not like we're interested in doing many tourist-y things anyway, or even stopping any more often than is strictly necessary for bathroom breaks and eating. We do have the cat with us, after all, and while I think he's getting to be a better traveler every time he's forced to make a long trip--he is quiet for long stretches now, and really only meows when we're stopping somewhere--we obviously can't leave him in the car by himself for more than a few minutes at a time. And we can only even do that when it's cool enough outside that we don't have to worry about the car rapidly heating up. (Hint: That was not today.) So the last two days have just been driving, driving, driving.

Here's the seating arrangement: D is driving, because he likes driving, while I'm in the back entertaining Bug, who is in his car seat, while the cat is in his travel carrier on the other backseat. We did our best to travel light this time around; with every move, I get better at figuring out what's actually essential for the drive and the first few days in a new place (since it'll likely be a few days before our pod with all our other belongings can be delivered to our new home, once we have a new home). So the trunk is full, but not so full that we're dependent on the mirrors to see what's going on around the car. There are blankets shoved under the cat carrier, and my leg room is severely impeded by my purse and the bag of books/coloring books/activities that I am using to entertain Gregory.

Not surprisingly, the front seat is also being used to hold stuff, mainly food-type stuff. Our current car is a 2014, and it's got all sorts of newfangled safety features, including some kind of weight sensor in the passenger seat that tells the car whether or not to turn on the passenger airbag while also causing the car to beep incessantly if the passenger seat belt is not buckled. We discovered yesterday that we are just shy of that weight limit. Every now and then, if we go over a bump wrong, the car starts beeping at us, and D has to rearrange the things on the seat to convince the car that there is not, in fact, an unbuckled passenger in that seat. And when I say we're almost at the weight limit, I'm not kidding; if D so much as puts his phone on the seat, it starts beeping. It's ridiculous. I'm sure there's some way to turn it off (or maybe we should just buckle the darn seat belt), but we don't have the time or energy to figure it out by the time we reach our hotel every night.

By the way, Bug seems to (hopefullycrossyourfingerspleaseplease) be over his stomach issues. His appetite still isn't 100%, but his energy is high, his mood is cheerful, and there's been no sign of vomit for the past two days. (In case you're wondering, though, we did buy a puke-catcher-bin after the last incident, just in case). All is progressing normally.

Food. We've been eating breakfasts at our hotels, although I've got to say that continental breakfasts are a little boring for me as a vegan... thank goodness plain oatmeal is usually an option! We've been eating PB&J in our hotel rooms in the evenings, to save a little money, so we're really only eating out for lunch. Today was fairly decent Mexican food at a little restaurant in Sidney, Nebraska (I had veggie enchiladas, packed with veggies and beans and sans cheese, of course), while D and Bug had burritos. Yesterday, though... yesterday, we stopped at a hole-in-the-wall sandwich joint in Salt Lake City called Buds, which we found through Happy Cow (in case you've never heard of it, it's a website--and app--that helps you locate vegetarian/vegan/veg-friendly restaurants wherever you are). And oh my goodness. I had a vegan "cheesesteak" sandwich, with some kind of sliced/seasoned faux meat (which, if you know me, isn't normally my thing, but I do make exceptions on occasion) and an amazing cheesy sauce on thick, crusty bread. SO GOOD.

And now we're in Nebraska. For some reason, one my last road trip to this area, I remember Nebraska as being the most boring state ever, but this time around it's actually refreshingly pretty compared to the last few states. There are trees--trees!--and bodies of water and interesting landscapes. And now we're halfway through! Today was an easier, shorter day, but tomorrow we'll be putting our noses back to the grindstone.

Friday, October 14, 2016

Road Trip to Virginia: Day 1

Day 1. ~490 miles.

For those of you not in the know, the family and I embarked today on a cross-country drive; D has new orders, and we're moving to Virginia.

So today was the first real day of our road trip. We left amidst a light drizzle, the first real rain I've seen so far this autumn. The morning was uneventful; a fair amount of real rain, not much traffic, a straightforward drive. Bug, who has been recovering from an inconvenient and unpleasant stomach ailment, started getting sleepy as the morning progressed. We got Starbucks, we stopped for gas. I played games and colored with Bug, I let him watch a few cartoons on D's phone (thank goodness for data), and he eventually drifted off into a nap.

When we stopped for lunch at Chipotle, Bug woke up. Since we have our poor fraidy cat with us, the plan was that D would go in and quickly eat first, then Bug and I would go in while D waited in the car with the cat; But and I both eat a lot slower, and that'd give D a nice, quiet break while we ate. Of course, D made it barely five steps from the car before Bug let out an alarming burp, and then proceeded to vomit into my hands (I have ninja reflexes, so I caught the bulk of it). Many paper towels and some clean clothes later (honestly, more ended up on me than on Bug, and thankfully only a little ended up on the car seat), we were finally able to eat. Fortunately, I don't think this was any kind of major setback in Bug's stomach thing, as he bounced back immediately: sparkly eyes, goofy sense of humor, and appetite were all restored pretty much instantaneously upon emptying his stomach.

After that, we bought a vomit-catching-bin (just in case), and D opted to drive the rest of the way so that I could stay back with Bug. But that one incident was pretty much the most exciting (not in a good way) part of our day. More rain, off and on. The discovery that we had left Bug's stuffed animal at Grandma & Grandpa's house, where we had slept the night before. Occasional unhappy moans from the cat. Bathroom breaks. Boring, dreary Nevada landscapes. More coloring, a little reading.

We saw a rainbow!

Ultimately, we made it to Elko, Nevada, for the night. Upon entering our hotel room, the cat promptly hid under the blankets of the closest bed while I made peanut butter sandwiches for dinner. It had been a long day, so it wasn't long after that that Bug had his bath (not optional tonight), listened to a few chapters of his current book (The Dragon Prophecy by Geronimo Stilton), and crawled into bed, where he fell asleep quickly.

Smart idea. Tomorrow is another long day...

Monday, March 28, 2016

Decisions and Character

Today, Bug and I went to the park, like we do on many days. We drove out to a park near one of the Sacramento libraries, because he absolutely loved this particular park the last time we were there (after Family Blanket Fort Story Time, so that's how he refers to the park) and has been asking to go back. He loves the tire swing, he loves the roller slide, and he loves the big, grassy areas to run around in.

So we were at the park. There were other kids and parents there off and on, and for awhile there was a small herd of ill-behaved teenagers (admittedly, it hasn't been so long since I was an ill-behaved teenager; it's amazing how having a child changes one's perspective). There was also a gathering of homeless people in the picnic area.

I try my hardest to not be outwardly uncomfortable around homeless people. I do, I really do. I really don't want Bug to be developing any prejudices here because of me, and I know that there are plenty of people who are on the streets for innocuous reasons. So while we kept our distance, I didn't say anything outright about them, and I doubt Bug even noticed their presence.

Toward the end of our time there, Bug was playing tag with a slightly older kid. I was keeping watch, occasionally talking a little with the other boy's grandmother. And so it was that until the grandmother pointed it out, I didn't even notice that the homeless people were building a fire. But once I looked, it was clear that was exactly what they were doing, primarily out of sticks and cardboard, although I saw the guy building it looking through the trash, too, so there's no telling what else was used.

The other woman looked at it disapprovingly, but didn't seem particularly inclined to do anything about it. "Do you think we should call the police?" I asked.

"I'm not sure who else we could call," she replied, but she still did nothing.

"I wish I had the non-emergency number for the police here," I commented. And there the conversation pretty much ended. The woman collected her grandson to head home, and Bug and I followed suit about ten minutes later.

But the fire thing still bothered me. I don't know what the intention of the homeless people was--Cooking? Warmth?--but I was worried about it getting out of control and/or spreading. After all, this was a very windy day, there was an awful lot of smoke, and the flames had, by this time, gotten high enough for me to see them from a decent distance away.

And so, after a lot of thought and waffling back and forth, I decided to call the police. Bug and I got in the car and I drove close enough to the library to connect to their wifi (I don't have a data plan on my phone). I looked up the non-emergency number and called the police, who connected me to the fire department. The fire dispatcher asked me a few questions (mostly about what they appeared to be burning; it hadn't occurred to me before, but I imagine those picnic BBQs aren't really meant to burn anything other than charcoal), got my contact information, and ultimately decided to send someone over to check the situation out.

And so, feeling much better about the whole thing, Bug and I headed home. I wondered off and on while I drove if I was blowing the incident out of proportion, but I also knew my conscience would have niggled at me if I hadn't called.

So what's the whole point of this story? Well, there are a couple of things that the incident has left me thinking about, especially in relation to my son.

First, it reminded me how amazing it is to watch a young child trying to wrap their mind around an idea. I told Bug what I was going to do as I was looking up the number, and he did a good job being quiet during my phone call. But after I hung up, he had a million questions. Were the police going to come? Why were the firefighters coming instead, when I had called the police? (How did they connect me to the fire department? Are they right next door to each other?) Was it possible that the fire might get out of the BBQ and cover the entire world? Could it burn down the library? Would the firefighters put it out? How long would it take them to get there? How would the firefighters stay safe? Do they wear gloves to keep their hands safe? Do they wear socks inside of their boots? And on and on. He'd ask some questions, then get quiet for awhile, and then ten minutes later he'd ask a few more. He asked about how other fires start around town, and whether cigarettes could start fires. When I said that they could, he asked how. He asked if I had ever seen that happen, and I told him about the time when I saw a small roadside grass fire, which could very possibly have been started by someone's discarded cigarette. He asked about what I did that time, and listened, riveted, to my story.

The questions continued for the rest of the afternoon. That night, as Bug was lying in bed trying to fall asleep, we talked for a bit, like we usually do. And while mommy-calling-the-firefighters wasn't the only thing he was thinking about bythat point (he also spent awhile talking about how we need to get a farm [it would have parrots, turkeys, and hens... he later added pigs and cows], becoming a mermaid, and how he could enter the book Flat Stanley and become flat himself so that he could go through the cracks under doors), it was still very much on his mind.

Kids, especially preschool-age kids, are a bundle of questions. And I love that! I love seeing the paths his mind takes as it tries to comprehend new ideas. I love trying to answer his questions in a way he can understand, and in a way that invites even more questions.

The other point here is the point of proactivity. I don't want to be the kind of person who sits back and waits for someone to act when I can do something myself. And I definitely don't want my son to be that way. So we also spent some time talking about why I made my phone call in the first place, how the fire they were building made me uncomfortable and how I was concerned that they might lose control of it, so I called the proper authorities to come check in and "keep everyone safe."

And then we talked about how if he sees something that is wrong or bad, it's up to him to do something; he should never assume that someone else will take care of it, so he needs to be the one who talks to an adult about what he sees. He didn't really have much to say to that, but he was quiet for awhile, and it seemed clear that he was thinking about it.

Kids really do learn so much from us by example. I like to hope that an incident like this will cement my words in his mind on some level."Do the right thing" is more than just a phrase, more than just words; it's something I try to live every day.

Parenting is a long, endless process. Here's hoping I can continue to instill good character in my son while inspiring his curiosity.