Tuesday, November 26, 2013

Time it is a-crawlin

Somebody asked me when I'll be able to share everything I've learned about surrogacy, and I answered, only after this process is done for me. And I'm praying it does not get done for atleast 3 and a half  more months.That is so far away, and time, it seems to be crawling forward.

I have such a long way to go before making it into the safe zone. Even at the the best Indian NICUs, 24 weeks is probably considerably less promising than it is in the western world, where it is not very hopeful to start with. At 28 weeks, you possibly start to have some chance of making it. At some point, I think I'm going to put together a list of studies of what exactly are the realities faced by a baby born at 28 weeks. It is definitely something people should think about before deciding how many embryos they want to transfer.

Yesterday, the risks of pregnancy sort of struck close to home. One family employee's wife is, from the sounds of it, facing intrauterine growth restriction and pregnancy complications with a twin pregnancy. Here is a girl who was not infertile and really young, and should have had no issues with pregnancy. Her doctors told her that had she been carrying a singleton, her chances would be better  She is 28 weeks along, but the thing is she probably wont get to be at the hospitals with a good NICU..apparently her doctors told them that things did not look good. Hoping things end well. Gave her husband a Vitamin D sachet, for what little it its worth, because with a twin pregnancy with no supplementation, she was bound to have been badly deficient.

At my end, the only think I need to worry about continues to be Vitamin D. J cannot take the 2000 IU Vitamin D pills (she claims they make her throw up, but says she can down calcium and iron, which I find rather contradictory). I don't want to keep continuously giving her sachets, and the key is taking it regularly. So now I'm trying to have Vitamin D oil drops sent from America. As things continue to progress (you note that I have gone from saying "if" to "as," which represents a huge leap of faith for me), I will need about a gzillion things off Amazon, which I will somehow have to have sent to India. God I miss Amazon prime.

Once we make it past the 20 week mark (2 weeks away), I'll have to start thinking about fun stuff like telling people at work and how to arrange to feed my baby. At least the latter should make for an interesting post!

Tuesday, November 19, 2013

16w6d: Detailed anatomy scan mostly done!

I got us in today instead of having to wait, and OMG, the relief is indescribable.

My biggest concern was addressed: her cervix is closed at 3.2 cms, as determined by a transvaginal scan.

We did the detailed anatomy scan, and everything seems fine. I kept trying to cheat to see the baby's gender, the doctor laughed and told me that I had no chance of figuring it out. I am going to try again at the 19-20 week scan when we measure femur length. Am not too optimistic of my chances.

It is both a blessing and  a misery that I am not carrying this pregnancy. I'm saying it is a blessing because I probably would have implanted the 4 embryos that 2 surrogates did not implant, and unless we greatly lucked out, we would not have transferred the embryo with the mojo first. Its a blessing because my stress levels would have been through the roof through the entire process. It *may* be a blessing in that I am an untried entity when it comes to carrying a pregnancy longterm, while J is a proven deal.

It is a misery because my baby is nearly 17 weeks along and I have not felt him/her yet. Its a misery because trying to get J to take her vitamins is well...challenging. Nobody else is making sure she eats well...I've been giving her bags and bags of dry fruits (nuts, dates, stuff like that) to make sure she gets some bio available micro-nutrients into her. I have to beg her to eat meat because her B-12 levels are low. Getting her to this ultrasound took 3 scheduling attempts, and a little strategic bribing.

Based on my experience of surrogacy in India, few people are this hands on;they assume everything would be managed the same way they would manage their own pregnancies, and show up 9 months later to get the baby. This is what the medical establishment here advises as well.

I'm incapable of doing that...one of the reasons I moved back to India was to make sure that if I went this route, I could try to monitor the situation. I don't know if that will make any difference, or help at all, but I could not have done it any other way.

I want to meet this baby so badly, but definitely don't want that to happen for atleast the next 18 weeks. I keep counting down the time left once a day.

Sunday, November 17, 2013

Taking the sensible approach to treat infertility

This post was prompted by two things:  another blogger's accounting of her painful response to lupron during a FET, and yet another multiples pregnancy that may just end in the unthinkable

All in all,  I am struck by how often  doctors just follow a set protocol without being thoughtful about the situation, the patient's problem, the patient's comfort, and the long-term safety of both the mother and the child. If the doctors can't think about all these things, then the patient should, because ultimately, they are the ones facing it all. 

There are many roads to infertility. All we can do is identify the problem and treat it intelligently. When I say treat it intelligently, I mean choose a path that minimizes the number of injections you have to take, the hormonal overload you face, the number of FETs you have to do, and importantly, choose a path that allows single embryo transfers so you do not have to face the higher risks associated with a twin/triplet/quad pregnancy.

Here are some practical examples:
  • If you have a high-ish antral follicle count and a normal-ish cycle, choose the antagonist protocol over the long agonist protocol: The antagonist protocol is infinitely more "natural" than the agonist. Overall, most studies fail to show any benefit of one over the other.  The antagonist protocol is infinitely kinder to patients: you have to take a far fewer number of injections (Doctors, yes, this DOES matter). You can skip lupron. You have a reduced risk of OHSS. Knowing all this though, many doctors prefer the long protocol to the short protocol simply because it has been around longer.
  • If you can identify a relative date of ovulation, even with +/-3 days of variation, choose to do a natural FET over a medicated FET. That way, you don't have to start your pregnancy already having been on lupron followed by estrogen followed by progesterone injections, you simply start with Beta-HCG (RMA-NJ has a trial on this) followed by progesterone, and transfer 3 or 5 days after ovulation. Many doctors are now going with a natural FET now. Incidentally, this study found better results with a natural cycle as opposed to a medicated cycle. This does not surprise me, because mother nature is the best architect, and giving somebody three hormones to mimic the complex natural process should logically be the less efficient approach. I don't know why REs prefer a medicated FET.  One fertility center basically said that some doctors like the medicated cycle better because it is less of a hassle with respect to scheduling. Needless to say, I don't respect doctors who would pick medicated FETs for solely this reason. 
  • If you end up with a large number of embryos, then do your best to pick the best one in the bunch from the getgo, so you do not have to do 5-10 transfers to find your two good ones.  There are two things you can do for this: let your embryos grow till day 5 (most of which arrest are shown to be chromosomally abnormal) and test the rest. This part is up to your doctor. The embryoscope has some utility in this weeding out process to allow you to transfer your best embryo first. But it is not a conclusive/fool proof test by any means.  To really know which of your embryos is okay, you need to find a doctor who has the technology to offer a trophectoderm biopsy with CGH microarray testing. Note that a Day 3 biopsy and FISH testing are useless. Day 3 biopsies are bad for two reasons: Most embryos are actually chromosomally abnormal at day 3, and if you test at this point, you may throw out a good embryo (the doctor at RMA-NJ told me that a lot of the embryos that they had discarded as "abnormal" through day 3 testing/FISH turned out to be normal when tested at day 5 with CGH microarray: they had been "rescued"). The second reason is that the biopsy itself can damage the embryo, given that you are pulling out 1 cell out of 8. 
  • Avoid transferring multiple embryos: To do this, you have to let the embryo grow in the lab till day 5. This is where the patients may balk: if a low number of eggs are obtained, then most patients are reluctant to even grow their embryos to blasts. They don't want to see their embryos arrest in the lab, and somehow feel that if it goes into them, it may have a better chance. Here is the problem with that idea: right now there is little to no evidence to show that the womb poses any advantage over the petri dish. If you transfer all 3 of your day 3 embryos or two blasts at one go, you may win the battle but lose the war. I've lost count of the number of people on the blogsphere I've seen this happen to.  I've seen some people pull through through the skin of their teeth, after being on bedrest for months, and enduring unbelievable stress. Compared to that, a failed IVF cycle is a walk in the park.  If you can...grow your embryos to blasts, biopsy them on day 5, find out which one is chromosmally normal, and transfer that (pregnancy rate: 66.4%). Failing that, transfer one blast at a time without biopsying (pregnancy rate: 47.9%). 
The first two things I've talked about here, picking a more natural IVF, choosing strategies that minimize the number of injections you have to take (it is really easy), and picking a  natural FET is doable for many, and most people would have no issues with these things if they fit the necessary patient profile.

The third thing is a comfortable place to be in: If you have 12 day-3 embryos, you can easily make the decision to grow them further, and most people do. The testing is up to your doctor anyway. On the day of transfer, you have to make the harder decision of transferring one or two. Remember, a day 5 blast has about a 50% chance of implanting.

The fourth choice is the hardest. What if you get only 3 fertilized eggs? Making the decision to wait and grow those in the lab for 5 days, knowing that all of them may arrest at day 3 or 4,  and facing the reality of going home empty handed from your IVF is the hardest decision to make.  But therein is the gamble. You could transfer all three embryos on day 3, be ecstatic when you have a positive pregnancy test, and 20 odd weeks later, lose two or three babies. It has happened so many times, and I'm writing this post because I am very, very tired of seeing it happen. Everybody thinks that this could not possibly happen to them, or they choose not to think of it at all when going for embryo transfer, but really, they should. Not all doctors have a single embryo transfer policy, and they should. Because gambling with lives like this is not acceptable.

Despite my preaching, and my knowing all this, I gambled too. I wanted to transfer only one blastocyst at a time, but my doctor froze my embryos in pairs even after I specified that I wanted an elective single embryo transfer. I could have done a single embryo transfer and frozen the second embryo. I did not, because I was too afraid that freezing twice many be damaging. I green-lighted the transfer of two embryos to one surrogate, and prayed only one would implant, and I got lucky. My OB-GYN, who regularly sees surrogates, told me that she considered all surrogates high-risk. My mouth fell open then, and I asked, "Even the ones carrying singletons?" She said yes. They are apparently high risk for many reasons, not all of which that I bought completely.  As we move into the second half of pregnancy, I am terrified of pre-term birth. And that is with a singleton. If there were twins now, my stress levels would be much higher, and my fears would be perfectly valid. 

Take home message? Think long term, not short term. So hard to do, I know, but so prudent.

Thursday, November 14, 2013

Reassurances and (good) news

I've been rather surprised by the responses to the last post. First, I just want to say that even if I do move, I'll make sure all the legit people who want to find me would be able to. My new blog would be listed through Mel's website, and even if I wiped this website clean of everything, I'd still leave a post with my email address so people could get in touch with me to get the new address.

Also, I'd like to reiterate a big part of why I blog: to make information available to people. To this end, I made this blog Google-searchable a long time ago, and many people have found this site that way.

 I'm also not just invested in making sure the "regulars" find me (that was a thoughtless choice of words). Even if you came across my blog just now and would like to keep reading, you will be able to.

What WOULD suffer through the move would be the information itself. I'd like to still have a Google blog (not ruling out Wordpress though). If I stay with Google, I am not sure if the all my posts could be moved (anybody who knows about this, please tell me if it is possible, and how). Also, it would take a while for search engine optimization to kick in at the new site.

Taking stock, based on the lack of random visitors, I think I am mostly safe. But all it would take would be like one untoward visitor/comment. I still feel violated that I was dragged out there like that. The journalist kept telling me that well, she was given my information, and I kept pointing out that my RE had absolutely no bloody business to do so...but less said about that, the better.

I did get an incredibly nice email from somebody in need who found me through that article, and I want to say that I am really glad he did. But overall, people, I'd rather you found me through a Google search, and not the front page of a newspaper.

Anyway, moving on to pregnancy-related stuff....I got the results back for the Verify non-invasive fetal DNA test....and it was all negative! That conclusively rules out Trisomy 21, and almost certainly rules out Trisomy 13 and 18 and Turners syndrome.

It really, really SUCKS that I cannot find out gender: this test could provide me that information...they have it in a little file somewhere, but because I live in India, I have no access to it. Every medical professional is forbidden from revealing gender in this country. And for somebody like me, not knowing something so momentous is like smearing me with honey and letting ants crawl all over me. Seriously.

Finally, the only fly in the ointment continues to be J's Vitamin D deficiency. She swears she took two 60,000 IU sachets (she said she thew up a lot). I checked her levels again, and they were exactly the same as the last time....14 ng/mL. Deficient. Didn't know what the heck she was doing when she said she was supplementing.

So last week, I met her and watched her have one entire sachet. There are many reasons I'm so vehement about decent levels in pregnancy. One is if you are deficient, your child's risk for stuff like diabetes and other things definitely goes up. Second, Vitamin D deficiency in the second part of pregnancy conclusively and definitively increases the risk for all sorts of stuff  (gestational diabetes, bacterial vaginosis, other infections) that can contribute to second/third trimester complications, including preterm labor. As an important distinction, Vitamin D deficiency early in pregnancy can contribute to preeclampsia. There is so little you can do to even try to protect yourself from stuff like that. All you can do is avoid  pregnancies with multiples, have vitamin D, and check for infection regularly through urine tests. None of these are foolproof shields, but they're all we CAN do, and they may go some way in protecting you.

If things continue to go well... one ultrasound at 16 weeks for my own peace of mind), followed by the detailed anatomy scan at 19-20 weeks, and I cross the 30 week mark 10 weeks later, I may start to really believe that all will end well. Till then, in my too cynical, burned-too-many-times form, I remain deeply suspicious of the Universe's intentions.

Monday, November 11, 2013

I'm back!

My doctor gave the bare bones of my story and the address of my blog to a reporter, without asking me about it first (!). That reporter visited this blog and wrote to me asking me a bunch of questions, which I did not get around to answering for a few days. I finally wrote to her Saturday night asking her if she still wanted my response.

I woke up the next day to find the bare bones of my story, as well as my bloody blog address (!!!!!), published in a story featured on the first page of the biggest newspaper in India. I log in here and find random people visiting from like everywhere in India. I panic and shut down the blog, and go try to get the reporter to get my address off atleast the mobile version of the story. I succeeded after a few hours, and am going briefly online again to test the waters.

I can't believe this happened----I've always tried to stay as anonymous as possible, and I've lost track of how many reporters I've rebuffed. Let us hope damage control has been sufficient. I want this blog to be found by people who come looking for information on it, or who are part of the the ALI community, and not random gawkers who happened to read about me in the papers.

Worst case scenario: I think I may end up moving.  If I do....the regulars...you will know where to find me.