Questions and Answers… Part 1

I mentioned yesterday that I was going to do a post where I would give a little more details about the specifics of the two complications we are looking at, as well as provide answers to some of the questions that were first on our minds and the minds of our friends and family.   I will certainly not be offended if you just want to skim this post, or skip it altogether (actually I’d never even know!),  but I know there are alot of people who have said they would be interested in something like this, so here it is.

(Let me make sure to say that I have no medical background or anything, and this information comes from lengthy conversations with my two doctors and research I have done since then.  If you’re just stopping by this site because you did a search for one of these terms and my blog came up in your results, PLEASE make sure you also go read up on it from reputable, trustworthy medical sources.  I could have some of these details wrong!)

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We are dealing with two different complications that are completely independent of one another and are not related at all.  The odds of dealing with even one of them is extremely rare, so for us to have both complications in one pregnancy is basically unheard of, according to our doctor.  Both are things that we had no control over and could not have prevented.   They both have more to do with genetics than anything else.

The first issue is called Iso-immunization, which is basically an incompatibility between my blood and the babies’ blood.  My body is recognizing that the babies (one or both of them) have a specific protein in their blood that mine doesn’t have (I am rh-, Nate is rh+, and apparently at least one of the babies has inherited his blood type).  Since this protein isn’t normally present in my body, it is treating it like a threatening foreign object and has started trying to attack and destroy it by making a very specific antibody.   If my body is successful in attacking the babies’ red blood cells, they would develop anemia and their blood would be compromised.   We would have to do a transfusion so that they would have clean blood flowing through their little bodies and hearts instead.  As of right now, their blood has not been affected by my antibodies yet.  My antibody count is extremely high, which means that it is trying, but so far the babies have not been affected.

You might have heard of iso-immunization before…sometimes its called the “rh factor,” the “rhesus factor,” or “rh disease.”   On its own, iso-immunization isn’t that uncommon; lots of women who are rh- deal with it if they have a baby with someone who is rh+.   The reason it is so weird for me is because there are specific situations in which this arises, and I don’t fit into any of those categories.   For example, this doesn’t happen in a woman’s first pregnancy, but it did in mine.  If it DOES occur in a first pregnancy, it is a result of a “sensitizing event” that is usually some kind of traumatic experience to the baby, and you know exactly what it was.  But for me, there has been no “sensitizing event” that we can find.   Sometimes it happens before a woman got pregnant to begin with through something like a blood transfusion or contact with a contaminated needle, but it shows up on the initial bloodwork done at the beginning of the pregnancy.  They ran that bloodwork on me at the beginning, and the results came back negative…which means that it started for me right in the middle of my first pregnancy with no trigger whatsoever.  That’s the weird part, and that’s why it baffled the doctors so much.  There is basically no explanation for it, and the factors in my specific situation are what make it so far-fetched and rare.   The good thing about all of this is that it started late in the pregnancy.  If it had started in the first or 2nd trimester, I probably would have had multiple in-utero transfusions by now… so we are so thankful that it occurred at the end when we have a chance of delivering with no transfusions at all. Keep praying that this will be the case!!

** If you are interested in a little more information about the isoimmunization issue, here’s a description and explanation  from the Institute for Maternal Fetal Health.  Here’s one from the medical center at NYU.  Both of these give good, solid explanations and are from reliable sources.  When you’re reading them, though, remember that they are going to give the full spectrum of possibilities, so alot of the side effects and risks mentioned here are not necessarily pertinent to our situation.  Most of the really scary-sounding results are for situations that are much more severe than ours.

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The other issue we looking at is called Skeletal Dysplasia. There are hundreds and hundreds of types of SD, and there is no way to really know what type we’re dealing with until after the boys are born.  SD is a chromosomal abnormality that affects growth, and cases can fall anywhere on a very big spectrum of severe to extremely mild.   In our case, it appears that Barrett will most likely be born with one of the mild types.   I can’t provide a ton of information on this one, because there are so many possibilities.  Every different kind of SD has different side effects and different ways it has to be handled.  Most of our information and education on this will have to happen after the boys get here.

The good thing is that since Barrett’s case seems to be mild, there is a really good chance that it won’t be visible when he is born.  The boys will still probably look pretty much the same, and we might still even have trouble telling them apart!  It will start to show up as he starts to grow a little more, but it will most likely be a gradual difference.  This means that it could be months until we know for certain exactly which type he has.  Unfortunately,  DNA testing doesn’t really help with determining the specific type, so we cant just draw some blood and have it analyzed.   The exact diagnosis will be a process.

If it really is as mild as the doctor is expecting, then Barrett will not have a significant disability or anything.  He will have some health issues as a result of unproportionate growth, but they will not be major.  Things like respiratory issues and joint issues are common, and we might have to be more careful with him as a baby for things like head support.  He might be a little behind when it comes to physical development and motor skills, just because it might take him longer to learn how to use his limbs correctly if he has joint issues.  So he might not roll over or sit up or walk as quickly as his brother.  Eventually though, he will probably be fully functional.  We might have to make a few minor lifestyle changes while he is growing up, but they probably won’t be significant.  It doesnt appear that we will have to deal with things like wheelchairs or walkers or anything, and hopefully we won’t be looking at serious, long-term medical care or treatment.

Of course, all of this depends on exactly which type he has.  Thankfully, the fact that it is showing up so late in the pregnancy is a huge indicator that it is a mild case.   If it had shown up in the first or 2nd trimester, we would be looking at a much more severe situation, and things would be totally different and much more risky for his health.

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Since this has been a long post just on its own, I’ll save the part about our most common questions and answers for tomorrow.  It seems that I have been asked the same questions multiple times, and most of these questions are the same ones I immediately asked our doctor when we received the news…so it seems like everybody (including us) has thought through it the same way.  So I’ll answer those questions in another post, because I’m sure there are lots of other friends and family who have wondered and want to know the answers.  And of course if you have any other questions, feel free to ask.  I dont mind answering them if I know the answer…and if I don’t know the answer, it will probably be added to my list of things to ask my doctor!

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One thought on “Questions and Answers… Part 1

  1. I love your Godly attitude about all of this. I have no doubt that God can completely heal you and Barrett. Either way, I can already tell that God is going to use you to minister to others through this situation. Keeping you guys in our prayers!

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