Saturday, April 6, 2013

All is Well - Hard Things to Think About

Ramble Warning. 
Depressing Statistics for Women with AMA 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.
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(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%)?

or 
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. 
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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. 

26 comments:

  1. hiya, im just catching up (been away from blogging for a little while) congrats on Twins! so pleased for you! i too am of ama it played on my mind constantly, when we received a scan showing the Echogenic foci, we were thrown into the world of stats/amnio's and all that comes with it, do we/dont we, i wish had some words to take away your stress, will be keeping everything crossed for your little ones x

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    1. I've been pretty MIA myself except occasionally catching things on my phone (which is very hard to comment on.)
      Hoping that the EIF turned out ok! Thanks for the support.

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  2. I wish you strength as you make these hard decisions nad my fingers are crossed that everything goes well for you, the babies and your SIL

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  3. Oh my....I feel your pain! I too am advanced maternal age but using a GC and DE In a southern state. We are doinging the DE IVF in Atlanta but my GC will be monitored in a very small town. Picking an OB was a nightmare and they are all very prolife. We plan to do an amino which I imagine we will have done in Atlanta sice we could barely find an OB. DH and I are both in the medical field and what we decided was an amino instead of a cvs at 16 weeks but in the event of a termination or reduction we would take the GC to a top hospital in the North East. ( ESP for a reduction) since we were informed it would not be possible in GA. Even with am IVF/ I CSI cycle there is a chromosomal abnormality of about 2-3% and our clinic doesn't Reccommend PDG or CCS testing for a DE cycle so would like to do something. Our basic plan is maternity21(sp?) at 12 weeks, Nuchal at 11weeks and detailed ultrasound at 16 weeks followed by amino if needed.

    I wish you the best of luck and a healthy baby.

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    1. We are in GA as well. And will be having the amnio at 16 weeks.
      Our nuchal done the other week and everything looked fine there, and had the cell-free DNA then. Have talked to some people on it and there is mixed reaction on how accurate it is with twins, but still it's something I suppose. We just won't have dropped the extra cash that wasn't covered by insurance and waited for the amnio.
      The office we go to is in Fayetteville, so I feel ya on the smaller town issue. They are remarkably advanced though, so we decided to put our religious differences aside and go with them rather than stress out our GC to drive all the way to Atlanta. The doctor did say they can recommend someone for termination if it came down to it, but yea, we are doing the amnio at 16 weeks too.

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  4. I have been having a lot of these same worries as I am also AMA. We decided to start with MaterniT21 and the NT scan and if anything is abnormal perhaps do additional testing. I know it doesn't test for everything but it would tell us a little something at least. It's so scary and I hope everything comes back normal for you.

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  5. Big hug to start with :-) Anonymous in the post before me has some good advice. My suggestion is to take a deep breath and steady yourself. It's terrifying being pregnant as an older Mum and yes, things do and can go wrong. However, they can also go right. Say that fifty times in front of the mirror :-) I got pregnant at 38 - and my child is perfect. I got pregnant four months later and our baby girl died and we later found out she had Trisomy 13 (I think it was 13 - might have been 21 - the conversation was a bit traumatic and I can't remember it very well) It's good to be aware of the statistics but also good to allow nature to do the right thing - because sometimes it gets it right :-) I look back on whether I would have wanted a child with severe retardation who was going to die within a year. NO. I'm sorry but it's not fair on the child and it's not fair on the parents. I do not support generalized abortion by the way and never have. HOWEVER... if it is necessary because you KNOW that there is going to be pain and suffering and no positive outcome then there is a case to look into it which is a very personal one. My suggestion is to perhaps seek a second opinion if possible. At the end of the day, you do what works for you - and if you feel comfortable being thorough then do it. It is YOUR choice whether to bring a child into the world who has little quality of life and a poor prognosis. If you need the test done earlier to give you time to think then so be it. A lot of people see celebrities popping out babies in their forties... Halle Berry is pregnant again at 46 I hear - how many of these older ladies give birth to special needs kids? They don't. You would think with the statistics that they would. The whole situation is a HUGE mess simply because these celebrities won't own up to using donor eggs. I don't know really how to help - I feel that I'm not helping at all really here :-( other than to encourage you to find the information you need to. It is YOUR CHOICE. Remember though - sometimes, nature gets it right... another HUG :-)

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  6. First of all, it is so nice to hear from you again! I have been anxiously waiting for an update. I didn't realize that selective reduction was so looked down upon in the south. It seems very common (or at least commonly talked about) here on the west coast. I don't know if I could ever choose to do it, but I absolutely can understand why someone would if the baby would have such a low chance of survival. My miscarriage at 9 weeks, 5 days was a result of our baby having trisomy 18. We were saved from having to make these hard decisions. I pray that both your babies are very healthy and you won't have to even worry about it.

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  7. I too, like anonymous's idea of taking it one test at at time. FWIW I do not blame you at all for wanting the testing done nor for thinking about what you would do in a worse case scenario. I hope that you won't have to face that kind of decision at all.

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  8. Living in the Bible belt certainly has its share of challenges! It's hard to separate anything from the religious aspects down here, and we too have faced our share of challenges in trying to find things as simple as tests for various disease panels needed to do surrogacy. Unbelievably enough, we landed with a general practitioner who is both a full-time MD and a Free Will Baptist preacher. He's been not only supportive, but actually has gone out of his way to help us do what's needed. I tell you this because I want to encourage you to immediately schedule another consult (maybe by phone???) with a perinatologist. I'm hoping that you can talk to a few, tell them what you need done and your time-frame, and then make an appointment with the one you select instead of having to deal with the one described above. Truly, that added stress is of no benefit to anyone. Fingers crossed that the right person is put into your path quickly. Best wishes!

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    1. Thanks. I actually considered it and may still do it, but I'm not sure if I wouldn't run into the same thing (or even get an appointment in time.) Found out this guy works with 20+ different groups/office, (I'm going to guess that a big bulk of GA's paternalist offices!) I think this doctor will be fine once we get over this scary part, but it was a rude awakening.
      I had the same OB/GYN from 15 until I was around 37 (he retired then) and even though he was the only doctor in his practice (didn't even take credit cards!) I don't think he would have ever behaved this way towards patients. He was a wonderful man with a wonderful staff.

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  9. The stress never ends, does it? Don't let anyone cause you to second guess yourself...making the right decision is never the easy decision...you have to do what is best for you and your family...I support you totally and totally get where you are coming from...it's hard enough being 40 and trying to have a baby...why does it have to be so complicated?? Let me say this...people have no right to judge you...it's easy to judge when you've never had any problems or had to face anything like this..keep your head up...be positive and try to enjoy this pregnancy!!

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  10. You do what is best for your family. I was in your shoes, faced with the notion of a child with trisomy 21. I was too afraid of losing a normal pregnancy to do an amnio, so I opted for the anatomy scans and bloodwork only. We had a boarderline NT reading, followed by a normal anatomy scan followed by the last scan which showed an echogenic cardiac focus. We followed up for a fetal echo with a pediatric cardiologist who confirmed multiple ventral septal defects and told us there was about a 95% chance our baby had trisomy 21. At almost 20 weeks pregnant, I gave in and did the amnio knowing we would terminate if it was positive for CA. The wait was torture, I spent a week crying and unable to eat while I called around to clinics and hospitals looking for someone to do a late second trimester termination. It was almost impossible and I'm not in the south. Finally, we got the results and everything was normal. My daughter had heart defects that go hand in hand with increased NT readings and echogenic focci. A follow up fetal echo before her birth revealed the VSDs had closed up completely on their own, and she entered this world perfectly healthy. My experience taught me that most people have very little understanding of what the reality of CA means for people, and have a very easy time judging others. Please know that the anatomy scans have a very high false positive result. If you wait, no matter where you are, finding someone for a later termination may be difficult, as well as being much harder on you emotionally after you've felt movement, seen all the ultrasounds, heard the heartbeats, etc. I don't know the risks for twins but after having gone through what we went through, If I was ever pregnant again would go straight for amnio or CVS. I can't tell you the emotional toll not doing that right away took on us. Best of luck and hoping for you that everything is fine and you don't have to face any difficult decisions.

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    1. Thank you for sharing your story. That must have been pure torture! We are doing the amnio at the 16w5d mark. It's better to do it later, but we run into GA law after 20 weeks. Someone mentioned a special type of amnio that has faster result times. I need to check into that.
      Hopefully all this worry is for nothing.

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    2. Just wanted to wish you luck with the amino -
      The early test result is the FISH - I think the preliminary results are ok with twins - but definitely ask bc it's is an extra cost of 600 in NYC .

      I hope your GC is having a great pregnancy

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    3. Thanks! (I will make sure to ask!)

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  11. I just wanted to say that I feel for you. I do not think that a Doctor should allow his/her religious judgement to stand in the face of his profession. I am the aunt of a wonderful, wonderful boy with severe disabilities. His parents need to spend $70,000 on a minivan to lift his wheel chair or they will not be able to travel as a family. That means he would be stuck inside, not able to go on vacation or to a museum. I hope you never have to make this horrible heartbreaking decision and hope that your twins will come to you healthy and happy.

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    1. Yes, both my husband and I have a wonderful niece/nephew (one on both sides) with serious disabilities, so I know what you are saying. We love them dearly and wouldn't trade them for anything. But I guess at our age there are some things we could handle and some we could not. Things we could handle now, we might not be able to when we are in our 70's. My great aunt is in her 70's and has enough medical and dementia that she had to be put into an adult care facility. (Fortunately, we have the money now to pay for a good one and visit all the time.) I don't expect that for us, but I also don't expect that I could lift a 90+lb adult all day every day either. Which could happen with some CAs.
      Plus I don't think it's fair to put our surrogate (my SIL) through so much for a stillborn or baby that would die a few weeks later. Or us.

      Thank you so much for your comment.

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  12. I remember reading this on my phone and not being able to comment even though I absolutely felt it necessary. I needed to convey how courageous I think you are for: a) posting on a difficult life situation that I am sure so many others are working through but are fearful of writing about publicly, b)taking the time to talk through these extraordinary decisions as a family, as messy and uncomfortable as it can be, and c) making a decision based on what is best for your family, regardless of others'(i.e. NOT the mom and dad's) opinions. You are a real inspiration.

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    1. That means so much Bernadette. Thank you.

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