Vaccine, Schmaccine
I've been listening a lot to Jenny McCarthy.
Specifically about vaccines.
Rolo is fully vaccinated to date. Let's just get that out of the way.
I don't really question the idea of vaccines; I think kids should be vaccinated. But I have begun to question the timelines for vaccination. Rolo's first vaccination occurred when he was about 30 hours old for
hepatitis B. At the time, I thought this was odd, but since the doctors were recommending it and I was planning on vaccinating him anyway, I okay'd it. Most hospitals offer the vaccine to newborns. According the the CDC, hep B is transmitted by "
contact with infectious blood, semen, and other body fluids from having sex with an infected person, sharing contaminated needles to inject drugs, or from an infected mother to her newborn." It was already known that I didn't have hep B, so I wouldn't be transmitting it. So looking back, and given that the chance of my newborn having sex or shooting drugs was fairly small, I could have passed on that vaccine for now.
I know, I know. They offer the vaccine at birth because it can be given to a baby that young and because it ensures that children who will almost never be brought to a doctor again will have at least that vaccine.
I know, from our lovely genetic sequencing escapades, that each person can have any number genetic hiccups that they don't even know about. Would never know about unless they had extensive genetic testing. Things that don't effect anyone's day-to-day life. Variants and mutations that live outside the world of exhaustive research and studies. So, do I think it's possible that a vaccine could effect a genetic mutation or variant? Maybe jump-start something that was already there? Yeah, I do. I mean,
yeah.
I can almost see at least one of you rolling your eyes. People point to the case I linked to above and cry "See?!?!?! Vaccines DO cause autism." I'm not ready to jump to that conclusion. But I do think there are ways in which vaccines could aggravate some existing thing. It seems to be the consensus that
genetics and environmental factors play a part in autism. Depending on which statistics you look at, one in every 150 to 500 births, results in an autistic child.
According to some, it's the fast-growing disability in the U.S.
I'm not just pointing to vaccines themselves either. There are other environmental factors. Take a look again at the chemicals in half of the things we eat or products we use. Do we know how any of them might effect an underlying condition?
I don't mean to get all apocalyptic here. All I'm saying is that never questioned the safety or the timeline in which vaccines were given before Rolo was born. I never questioned a lot of things before Rolo. Find out about the timelines. Do babies need to be given 3 vaccines every 3 months for essentially their first year or two of life? Are there delayed timetables for giving vaccines? When, or do, children "have to" have vaccines? I already researched the answers to these questions.
Ask questions, do your research, make decision based on what you think is right.
Labels: CF, hippie-dippy, parenting, Rolo
Charities Are Beginning To Get on My Nerves
Well, that should get me some brownie points with karma, right?
About six months ago, I donated to a cystic fibrosis charity. As you may remember, Rolo was at risk for possibly having an atypical type of CF, but it seems he's fine and I was feeling like I should do something to pay it forward. So I donate. And since then I get another request via snail mail every week to donate more. Requests that come with packs return address stickers, personalized just for me. As if to say, "we made you these labels, now don't you want to make another donation". So I now have no fewer than 500 return address labels. Whatever.
But now, other charities have gotten wind of my charitable nature and I'm now getting literally 3 donation requests a week from all sorts of organizations. Breast cancer research. Diabetes. Alzheimer's. Lung cancer. And they all come with personalized return address labels. Or some other gift. Like a nickel. There's actually some charity that mails you a freakin' nickel in order to entice you to donate. Wha? YOU ARE A CHARITY. SAVE YOUR NICKELS!
Today from the cystic fibrosis people, I got a personalized notepad in a fall theme, along with, you guessed it, some fall-themed return address labels.
My question is, what to do with all this stuff? I mean I feel bad just tossing all these labels. It seems wasteful. But is it also wrong to use free stuff from a charity to which I'm never going to donate? And couldn't they just take all the money they'd save in printing all these labels and use that for their charity?
I'm going to use the notepad I received today. But that's only because I will eventually donate to CF again.
Labels: annoying me, CF
On Being Pregnant, Part 2
Yesterday, I had an ultrasound, because one of my doctors was a little concerned about growth, because my abdomen has been measuring small. With the whole CF factor, she wanted to take every precaution/measurement/test available. Turns out the little peanut is measuring just fine and weighs 7lbs 9 oz. In case you're in on our baby pool, which includes guessing the weight, I'm not really giving anything away, as the ultrasound can be off by as much as a pound in either direction. Anyway, the ultrasound wasn't as fun as previous ones, because the more fat on the baby, the harder it is to see the images. So...really, you can't tell it's a baby anymore.
Today I have my weekly doctor's appointment, along with my weekly non-stress test--another precaution because of the CF factor. All these appointments are starting to get on my nerves.
I thought of
a couple of other things I've learned:
11. Don't totally "give up" once you're pregnant. Being pregnant is not an excuse to stop wearing makeup or for wearing sweats out in public regularly. Do not run out and buy a minivan the second you get a positive test result.
12. If you see someone who's pregnant, do not ask "Are you having a boy or a girl?" and then act like the person must be retarded when the answer is "I don't know."
13. If you're pregnant, consider not being a total control freak and opt not to find out the gender of your baby. Sorry, that was judgemental of me. But seriously, as much as I
want to know, not knowing is incredibly fun. Yes, it makes picking out bedding and outfits harder. But you have the rest of their lives to know their gender and only 9 months of it being the greatest surprise of your life.
14. If you do find out the gender, for God's sake, don't start referring to him or her by name before he or she is born. That's just fucking weird.
Labels: CF, preggo
No Man's Land
So the other results came back, and as I suspected, the baby has inherited the combination: my mutation (delta 508) and one of Ron's variants (M470V). That particular variant of "unknown significance" as they say, is thought to cause chronic sinusitis and CF-like lung disease. Because the baby doesn't have Ron's other variant, we probably don't need to worry about pancreatic disease. It's unlikely that the baby would have
classic CF, but you know, they aren't willing to rule anything out completely.
I feel like there are two groups of expectant mothers out there: the majority that have no reason to believe their child will be anything perfect and the minority that know prenatally that there is a medical condition. The former is happy, excited; the latter is freaked out.
And then there's me.
I'm not quite justified in being freaked out, because I don't know that anything will be wrong. It's pretty much unknown what, if any, symptoms will present. So to put myself in the same category as women who really are dealing with medical issues isn't right. On the other hand, I can't say I'm relieved. I mean, I'm relieved it most likely won't be classic CF, but it's not like there's nothing to worry about either. There's more research to be done, more doctors to meet with.
The weird thing is that I'm surprisingly at ease with all this. I mean I've been known to freak out over a lot less. Maybe because I feel like I know everything will be okay. I don't know if that's some kooky women's intuition or if I'm in denial. Or maybe, because for whatever the reason, whatever the result, this is what has been chosen for me. God's plan and all. Perhaps there is grace in acceptance. And for the next five months, this just has been be a regular pregnancy, one that I'm excited about.
Because I am excited. I must be, because never once have I wished I were not pregnant. For someone who is ambivilent about having kids, that says something.
Labels: baby, CF
Testing 1, 2, 3
So we got initial results back from the amio and so far, it's good news. Which I pretty much expected, because what are the odds that we'd have an increased risk for CF as well as Downs or spina bifida? I mean, really, even bad luck runs out eventually. Of course the results that aren't in are the ones about the CF. Who the heck knows when they'll be in, but so far, I'm pretty zen about it. I think I've mentally prepared myself for the results showing that the child has inherited the combination of Ron's and my defects. And if that's the case then we know absolutely nothing more than before we tested. So you know, I just have to be okay with that and accept that with any luck, everything will be okay. In my mind, everything IS okay, but I'm not sure if that's a defense mechanism or not.
Relatively few people know about this CF thing, but there are a couple who do who seem to think I'm making a very large mountain out of a mole hill. I suppose that's possible. But it still makes me want to punch those people in the face. I realize I'm not the only person to ever go through this, the possibility that something could be wrong with her child. I also realize that other people are dealing with much harder issues, like actually having a child with significant medical problems, instead of just an increased risk of a problem. And really, after seeing what my sister-in-law went through this summer, no one needs to tell me that it could always be worse. I know. I've seen the worst. But that doesn't make me want to punch people any less when they imply that I'm overreacting either. When it happens to you and your baby, and if you think it's no big deal then,
then you can judge me.
Chances are, this kid will be fine. The main way it will affect us is whether and how we have another child. I think Ron and I envisioned having two. That being said, I think I'd be fine with one. I don't want to "not know" what's going on if there is a next time though, which means if there is a next time, it may need to be by in vitro. There's a pre-selection screening process in which they can essentially leave out embryos that have the defects. Seems like it might be way too high tech and troublesome for me. We'll cross that bridge when we get to it, I suppose.
In other news, unlike trying to tell on an ultrasound, my doctors definitively know the gender of the baby. It's strange to me that people know now. Personally, I don't want to know. But I can't say I'm not a tiny bit curious, especially now that I know it's in my file.
Labels: baby, CF
What You Wouldn't Know By Looking At Me
I have to tell you that the early weeks of this pregnancy were some of the most lonely and isolating of my life.
So, you know, I like to try to be perfect. Not perfect-perfect, of course. But really good at the things I know I should be good at. My parents expected a lot from me academically as a kid and I've held myself to relatively high standards ever since. I'm fairly smart, have pretty good genes and so some of this comes somewhat easily. A lot of my time at the gym is (was?) dedicated to developing the perfect body. Not perfect as in flawless, but perfect as in as good as my body could be. So I've kind of gotten used to things being relatively easy for me. Not to say that I don't work hard, but I can't say I've had a whole lot to overcome either.
So when I learned I was pregnant, I had already been doing all the things a possibly pregnant person should do: sleep more, drink less, eat well, exercise, take prenatals, etc. When I met with my doctor and she confirmed the pregnancy, she was very pleased with the steps I had already taken. I like being a star pupil...or patient, whichever the case may be. So I figured I would pretty much have the perfect pregnancy: I would do all the things you're supposed to do when pregnant, but not get all crazed and neurotic about it like some women do. I actually thought I'd be pretty sick at first, but as it turns out, and much to my surprise in the most pleasant way, pregnancy seems to suit me. I haven't been tired and I haven't been nauseous at all. I'm slightly concerned that I might never go to the bathroom like a regular person again, but that's minor in the grand scheme of things. In fact, in many ways, I feel better than I did before I was pregnant. Even my doctors seem to classify me in the category of lucky minority as far as pregnancy symptoms go.
So when my doctor called me and told me my bloodwork showed I had a genetic mutation, I couldn't have been more shocked than if she actually had reached through the phone and slapped me. I certainly felt like I'd be slapped.
Turns out I'm a
cystic fibrosis carrier. I have been my entire life without knowing it. I inherited the gene defect from one of my parents. Finding out that I had this mutation pretty much fell under the catergory of "information-I-could-have-used-yesterday". Yesterday being a figurative term for "before I was pregnant". Carriers are symptom-free, which is why, of course, I never in my wildest dreams would have guessed that I was one.
Anyway, I've become something of a genetics expert over the last couple of months, something that those of you who know me, know that science isn't usually my thing. And while I'm finding that genetics can be very interesting and cool in some ways, it'd be a lot more interesting and cool if it was happening to someone else.
You need two cystic fibrosis (CF) carriers to get together in order to have a child with CF. Even then there's only a 25% chance that the child will have CF; a 50% chance that just one of you will pass the mutation and therefore the child will just be a carrier like I am. The remaining 25% is the chance that the child will not inherit any form of the mutation. So now the question was: was my husband also a carrier?
He was immediately rushed for bloodwork, for a carrier screening that picks up basically 90% of the common genetic mutations. While waiting for the results, we learned from our genetic counselor that there was another test that could be done with an accuracy rate of 98% (I'm simplifying here a bit, but this is the gist). Why the hell anyone would want the test that's 90% accurate over the one that's 98% accurate is freakin' beyond me. So we waited for the first test results to come back and then decided to go on for the more complicated, but more accurate test that required full DNA sequencing. We waited an agonizing 10 days for the first set of results to come back, and then another 3 weeks for the second set.
I wish I could say for sure that it's good news. The good news is that Ron is not a carrier of a common mutation like I am. The bad news is that there are some complicating factors that make it impossible to know for sure what the outcome is going to be. It's entirely likely that the baby will be perfectly fine. But we are still at an elevated risk for having a child with CF, either in its traditional form or more likely, something they call atypical CF. Atypical CF usually means that the child only has one or two symptoms of typical cystic fibrosis. And while it's certainly not as bad as full-blown cystic fibrosis, I think every expectant mother would agree that she'd rather not hear anything could possibly be wrong with her child.
While there's no way I could have known that I was a carrier, and it's nobody's fault per se, it is an awful feeling to know you could have unknowingly passed something on that could affect your child's health. I'd much rather something be physically wrong with me.
For as cool as science and modern technology can be, they have their limits, which is incredibly frustrating when you hit those limits. We got involved in all this genetic testing because we wanted answers and we were more or less assured we would get them. What I guess no one expected was our particular combination of genetics, which makes it impossible to get anything concrete. Oh, we can, and probably will, find out what combination, if any, of our mutations/variants the child has inherited. But if we were both CF carriers and learned the child had inherited both our mutations, we would know for sure that the child had cystic fibrosis. With that information, you can make decisions. However, in our case, even if we learn that the child has inherited all the bad genes, there's still no telling what, if anything, will be wrong. True, it makes it more likely that the baby will be perfectly healthy, but it doesn't give us any real answers in advance. And real answers are kind of what you want when you get into the genetic testing game--otherwise it's pretty freakin' pointless.
So I spent a few weeks being angry, not all the time, but mostly when people were bitching to me about their problems, particularly the less-than-serious ones--the ones that I would take on in a heartbeat if only I could switch places. So this pregnancy thing has been a bit of a roller coaster. Until this summer with Baby M, I had never experienced true sadness and seen raw grief. And until this, I had never experienced true fear. At first we were keeping the pregnancy hush-hush because it was too soon to tell people; then it also became that, you know, we weren't entirely sure I'd stay pregnant. Those of you who know me know what a statement that is. So yeah, it was isolating and not very fun. Some days it was hard to talk to people about regular stuff. God-willing now, though, we know I'll be staying pregnant. And most days, I'm really happy about that. But like I said, it's a roller coaster. Most days are good; a few are not so good. Mostly, there's nothing to do but wait and see. What I am extremely thankful for is having an incredibly supportive husband. It's helped that he "gets" all this science stuff. In some ways, this is harder on him than it is on me.
We're not telling most people this. Again, I know I'm posting this on the internet and all, and I'm not sure why exactly I posted this except that maybe I just needed to get it out. A couple of my friends already know. Now you do--all 5 of you who read this. I'm usually pretty private about the negative stuff, so I'm sort of surprised I've told anyone at all. This isn't something I want to dwell on, because frankly, that won't do anyone any good. While I may not necessarily want to talk about it, I guess it will help for people to know that if some days I don't seem over-the-moon happy, well, you know, there's a reason.
Despite all this, we still have it better than a lot of other people do, and for that I'm thankful too. Turns out I'm just not, you know, as perfect as I thought.
Labels: baby, CF
