Depressing Statistics for Women with AMA Warning.
VERY Uncomfortable Discussion about Chromosomal Abnormality Warning
VERY Uncomfortable Discussion about Chromosomal Abnormality Warning
I wrote this over a week ago, but was afraid to post. It's been on my mind for awhile and still is. Since this is a blog about my experience and feelings during my journey, the honest thing to do was to post it.
After a year of infertility treatments and tut-tuts about my age from a multitude of medical professionals, I've become a little more sensitive than usual regarding my age. To compound the problem, a years worth of infertility treatments (3 IVFs in 8 months!) and the stress that goes along with them has left it's physical and emotional mark in more ways than I care to mention. Now I am faced with the added realism of doctors constantly calling me 41 BEFORE my 41st birthday, because they have to consider the age of the embryos when they are born. Why you ask? Because that is what counts for problems that may arise.
In the land of infertility, 41 is old and can cause a multitude of issues - age related things that most of us women with AMA didn't think of when we started down the dreaded infertility path. Besides decreasing our ability to get pregnant, our miscarriage rate increases, as does the chance that there will be a chromosomal abnormality. This last part is the current worry area we are visiting. Depending on where you look, our odds of having a baby with a chromosomal abnormality is somewhere between 1 in 13 and 1 in 15. (Note this is with fraternal twins, much different for singleton pregnancies.)
On the upside, the odds that both will have an chromosomal abnormality are about 1 and 900.
If you've gotten this far and are totally against fetal reduction in all cases - then you should stop reading here. I will have total respect for your beliefs and how they pertain to you, but I ask the same consideration for me. All of us in the land of infertility go through our own personal hell, and we really don't need judgement heaped upon us for the litany of hard things we have to consider every step of the way.
Since I am of "advanced maternal age" AND we are having twins, we are considered a high risk pregnancy and our surrogate has to see a perinatologist. We visited the new OB/GYN a few weeks ago (who won't be our actual OB/GYN, but that is for another post) and had our first visit with our Perinatologist last week. Building up to that visit, both my husband and I researched the heck out of the tests we would need to consider.
The consultation did not go well.
While I didn't think about it before, our Perinatologist must be a part of the same religious medical group as the OB/GYN practice (not uncommon here in the south). This essentially means he Was. Not. Happy. when we were trying to get information about options if the worst case scenario happened and one of the fetuses has a chromosomal abnormality (CA) that we feel we could not deal with. These can range from things that would result in a stillbirth to death after a few weeks of life to some that we feel the quality of life would be extremely poor. Termination is somber idea for us who have fought so hard for life.
At the doctor's appointment when discussing the CA tests, I uttered a question about "termination" and the doctor stopped short and very ADAMANTLY told me they DO NOT do that there. (Even our OB/GYN didn't act like he did.) Based on his attitude after that, we all began to have a genuine concern that he was misleading us on several counts. Tests he
up-sold recommended to us (instead of amniocentesis) that we later found out may not be recommended for twins or donor eggs (which in this case, my eggs would be considered the donor eggs.) This is especially odd since I'm sure twins takes up a large part of his practice. Additionally, based on information we knew, some of his numbers for risk were off. (Example of that is below.) Finally, he suggested dates for the amniocentesis that would not allow us to get the information back in time (for GA law) should it be one of the items that we would consider termination.
When I asked him directly about risk percentage of CA for what he was recommending - cell-free fetal DNA that tests for 3 types of CA - versus and the difference of the additional CA items discovered with amniocentesis, he assured me that miscarriage through amniocentesis was greater. (We do not have confidence that he was honest here.)
My hubby says this is confusing how I say it, so I'll try to clear it up.
(Chance of any CA (for 1 baby) in my age bracket with twins = 6-8%) - (Chance of one of the 3 types of trisomy that his test is for - variable X)
Is this > (Risk for miscarriage for doing an amniocentesis (.3-1%)?
is 7%-X > 1%
is 7%-X > 1%
So theoretically, if the cell-free fetal DNA tests only 4% of the CA's, that still leaves us with 2-4% untested risk. In my mind, that is a higher risk than the .3-1% from amnio. This isn't even including the other things amnio tests for that are non-CA. That 4% is probably pretty close estimate.
All of this is a major problem, but to get a new specialist would could cause us to run past the time period that were are so precariously balancing in at the moment.
Don't get me wrong, this is not something either of us takes lightly. I shouldn't even have to justify it as everyone has their own limits - and yet I still feel an overwhelming need to do so. We have gone through so much and if we had to make a decision like this, it would be horrific. But that said, both my husband and I are on the same page on what we would and wouldn't do when faced with certain results for certain tests. And our SIL/surrogate agrees as well.
Not only do we have to consider what we could handle at the birth of a child (death being a major one), but also as we age. Both of us have had a lot of experience with people important in our lives that have some very severe issues - both young and old. Enough that we wonder what will happen when everyone is much older and unable to physically care for them. With our siblings (and us) all in an older age group, the option of family being able to step in probably would not be available to our babies. Unless I left the burden to my son, which I don't think is fair at all.
A child born with a severe chromosomal abnormality can have devastating effects. More than likely one parent will have to not work, which can be a big blow in income. Add the costs of medical and 1000 other things normal people don't think about, and any savings could be wiped out in a very short time. It only money right? Yes and while that may be true, older parents entering their 70's and 80's may have zero money left over to care for their child when they no longer can (much less themselves). They are then faced with the VERY REAL probability of a mentally and physically disabled child that will be sent to a state run facility. Knowing the child will spend the rest of his/her life potentially living in hell is just not something we are prepared to risk.
So while I absolutely despise that we have to think about things like this, I guess I feel it's important to share. Because I think it's important we all know these things before we jump in.* That may not change our minds, in fact I can almost guarantee in most cases it won't, but maybe if someone is on the fence about other decisions (such as donor eggs)** then the information will be important to them. We all get so caught up in the idea and worry of having a baby, that we forget some of the other, very real, life changing concerns.
In my mind, there is no right or wrong answer with these tough decisions. I place no judgement on those of us that don't even want to know about things like this. Nor do I judge those who decide things differently than we would. In the end, we are all left with our own decisions and we must choose what we can live with 1, 5, 40 years from now - not what matters to outsiders looking in.
Sigh. I told you this would be a rambling post. We had such a small chance of getting pregnant. Heck, our chance of miscarriage was higher than our chance of getting pregnant. If we can just make it past the amniocentesis, then I will be able to breathe. For a little while at least.
*In our experience, which is A LOT of different medical professionals, we really did not get enough information about all of the risks for my age. Really the only one that was relayed to us was our lower chance of getting pregnant. I'm not sure if we would have made a different decisions, but I think medical professionals need to do a much better job of informing their patients about these risks.
**Even this does not guarantee that all will be fine and dandy as many here in IF blog land can attest.