Sunday, March 30, 2014

More on the realities of surrogacy in India

Part of this post is prompted by the the commenter in the previous post; her first comment was rather judgmental, but allowable. The second one was fairly rabid in tone, and talking about how a blood pressure value of 150/90 is not preeclampsia (no, of course it is not), and how the situation could have been managed while not uprooting J from her home environment, and finally ending with a rant on the utter uselessness of vitamin D, and how I was inflicting this utterly pointless thing on her.

Now, since I am slowly starting to attract the trolls, here are some ground rules for this blog: comments of that tone, with such a content will just be deleted, and you will never be allowed to comment again. You can say whatever you want anywhere else on the internet, and if you can find somebody to listen to you, good for you, but here, you get no talktime. You are, of course, welcome to spend a long, long time composing a new vitriolic comment. I will then delete it as soon as I spot it, and you would have wasted all that time. If the situation ever gets truly annoying, I will turn on comment moderation to save myself a headache, and then nobody can ever see your words of wisdom  for even a short while.

But overall, this annoying episode, and Katrina's very thoughtful comment highlighted that it would be useful to talk a little bit more about this situation.

I can't even begin to sum up what a minefield surrogacy in India is. All the doctors involved have expressed upon me a 1000 times that these surrogates are not like surrogates in the west, and how they should be handled differently. How they should be handled is the billion dollar question, and trying to come up with the most optimal way to do it is a very complex topic. I think I'll spend a good part of my book trying to thrash it all out, and atleast outline how some of the current practices should change, and how that change is sometimes stifled by various issues.

First, about medication compliance: from the start, her bloodwork has not tallied with the doses she said she was taking. I didn't want to not believe her, but if two sachets of 60,000 IU have not increased your blood levels at all, then something is off. She could be absorbing it very poorly, or she could be lying, or she could have been throwing up what she took. None of these possibilities could be dismissed, and to this day, I do not know what to believe. After I kicked up a fuss after the first few months, the Vitamin D she was taking started to be reflected in her blood levels. I have not checked in several months, and this drop has shocked the crap out of me. Again, cannot tell what the issue is, whether it is lying, poor absorption, vomiting after the dose, or very much increased needs.

Also, surrogates in India would have a very different take on say, prenatal vitamins and nutrition than a surrogate in the west. Such a person would be self-informed, and would understand what was going on. Because surrogates in India are mostly uneducated, they may not also take these things seriously. Also, nobody bothers explaining anything to them. They just say "here, take this pill or this injection." I've spent a lot of time just talking to J explaining what each thing does, and it is my duty to convey that information, even if she pays me no attention or does not understand. I've also tried to give her similar health advice about her own kids. Completely goes over her head, and if she ever takes my advice, I'd be shocked. Still, I cannot help myself. 

Here is some background on the housing situation. J lives in a sort of housing called a chawl. Her bathroom is outside her apartment, which means she has to get up in the middle of night and leave her house to go use the facilities, which is insanely difficult when your pregnancy progresses to this point. It is also getting hot here, and sometimes, without air conditioning in the noonday sun, you feel like you would get heatstroke. Imagine dealing with this when you are nearly 9 months along. Keeping all this in mind and how exhausted she is, I offered her the only comfortable option I could offer: hospitalization. She wanted to get admitted to the hospital after April 2nd, because she was also feeling run down/exhausted. When she showed up with a steadily increasing BP on March 26th, it was the OB's decision to hospitalize her, and I was definitely on board with that because I am really afraid about the medical facilities she has access to right next to her house (an extremely poor neighborhood), where her care would be coordinated by the handler. 

If you went with other agencies, you could have more options. Many surrogate agencies/doctors offer housing/more hands-on care. People can move in in the start, or in the last few weeks in case of a special situation (such as this one). My RE offers nothing other than the handler to manage the whole shebang. Dr Patel at the Akansha Clinic in Gujarat offers a home of sorts, where surrogates live for 9 months. The Mumbai-based agency Surrogacy India (SI)  has a few apartments where surrogates can be housed, and there is a nursing home in the same building, with an ambulance on the premises. While these options offer many benefits, what I do not like about these situations is that the surrogate is separated from her family. While there many be some advantages in separating her from her husband in some (e.g., if the husband becomes positive for an STD, or is deadbeat spouse (very much common in this socio-economic group), I would definitely feel a great deal of guilt if I separated her from her children for this really long period.  If I ever do this again, I'd want a situation where the surrogate could move in with her kids, and I'd be more than willing to spend the extra money to make this happen.

An alternate, viable option is to have your surrogate live at home with the family  (close to the agency's housing), and, if there is any sort of emergency that requires separation from her husband (SI told me the story of a husband who became positive for syphilis during the pregnancy) or for greater medical supervision, move into the agency's housing for maybe the last few weeks.In that way, she would be much closer to her family and see them on a daily basis, etc.  However, in my unique situation, I have no options other than the hospital.

Anyway, I just spoke to J. Apparently, she received IV antibiotics for an infection last night. I have no idea what is going on; going to go to the hospital to try to figure things out.

Friday, March 28, 2014

Admitted!!

Two days ago was J's 35-week appointment. The handler, who was supposed to ensure that J's appointment was kept, was herself unable to come there this week, and J wanted to cancel. I put my foot down and and badgered her into showing up. Had I not been on the scene playing policewoman,  J would have skipped this week, and that knowledge frightens me a little.

It frightens me because when she showed up, her blood pressure was 150/90 and she was admitted on the spot. I'm SO glad she is in the hospital now, where she will be monitored regularly for blood pressure and proteinurea. She is also on medication (alpha dopa) to bring the BP down. It turns out this was the story in the last pregnancy too: things were fine until around this point, and then her BP started rising, and she spent the last two weeks in the hospital.

Thank you Pam and Josey for your inputs. Yes, absolutely, waiting till 39 weeks and beyond will ensure that your baby's first few weeks are more comfortable/easy. I don't think I'll have that choice now. As of now, J cannot wait to get this done. She asked me if she could deliver at 36 weeks. The answer was a firm hell no.I told her that if things are fine medically, there is no way anything is happening before the 37-week point. I also told her that the OB would decide when things would happen.

To make matters a bit more strained, J wants to attend a wedding on April 15th: her sisters. I was flabbergasted: Even if she gives birth on, say, the 12th, I fail to see how she could be up to speed three days later. I'm not going to say, wheee....lets induce on the 9th, which is the 37-week point. All in all, I'm butting out of this and leaving it to the doctor. It is going to be a rather uneasy balance to strike, I think.

I had another jolt when we redid her Vitamin D test...I've been giving her a sachet of 60,000 IU every 2-3 weeks, and around like 6-month time point, her levels were a rather comfortable 23 ng/ml. This week, it was 11 ng/ml!! (just as a note, if you get below 10 ng/ml, you fall into very unhealthy territory).

If she has indeed been taking her sachets as she told me she was, it clearly shows that babies are little vitamin D leeches/vacuums, apparently. I know the mother's vitamin D requirements go up strongly in pregnancy, and it is logical it would go up even more in the third trimester when the growth really picks up, but to this extent?!?

The baby apparently has been growing well. There was an ultrasound done yesterday, and I got the information secondhand through J, and it hence may be inaccurate:  it seems rather high for 35 weeks, especially given that this has been a smallish baby all this while: 2.8 kgs (over 6 pounds!). This was a different operator/machine though.

All in all....getting into the final stretch. Gotta pack that bag now. Monday is my last day of work. Hoping to spend whatever little time I have working on that proposal for the book on Surrogacy in India.. It is also time to launch my new blog. And write a few pending blogposts for this one. And prepare for a baby!!!! So very unbelievable.

Saturday, March 15, 2014

Driving myself batty

I'm having a teeny tiny freak out. FOR NO GOOD REASON.

Everything is okay. J's blood pressure was 130/75 yesterday, so in the normal range. She is getting it checked out every two days.

The baby, as mentioned in the last post, is fine. After I put up the last post, another mom who used my donor told me that her baby was in the 95th percentile for height too. Awwww. As one of my friends puts it, the most random things are turning me into mush. The thought of my baby being similar to one of its (many) half siblings in any way makes me just melt. And I don't even have pregnancy hormones to blame!

Going a little off topic on a rant here, but India's decision to ban sex determination is one of most useless of its many useless decisions. I recently found out PGD is banned too, unless you have a genetic disorder, and can prove you have a "valid reason." Since I have only recurrent miscarriage, I would not qualify.

I wanted to talk about the futility of outlawing sex determination and the unbelievably ugly realities surrounding this situation in this country. I had it all typed out, and then I deleted it. I can't have that in the same post as this (see below!).

Moving to better, happier topics: my doctor switched the 4D mode on for a little bit at the last ultrasound, and I saw his/her little face!!  What is driving me batty is I want to discover my child. For example: This is going to be a biracial child: I spent a looong time wondering (googling) what colored eyes he or she would have. It is going to be utterly up in the air. Most likely, it would be brown, but then I may be surprised because I have people with hazel eyes and green eyes in my extended family. After brown, hazel probably comes in second, with respect to probability. All the rest should be way lower.

And some days, like today, I feel like I have no patience left. Recent studies have shown that babies born at 39 weeks onwards do best, and do slightly better than the ones born at 37 week in many aspects. These findings are prompting people to change the definition of "term" to 39 weeks.

Nonetheless, in India, the average point of delivery for surrogates with singletons is 37 weeks. If you are a surrogate carrying twins, it is before 35 weeks, I think.

I feel like I am hanging on by my fingernails till the 37-week point, and honestly, I should be pushing them all (J who is anxious to deliver, and my docs who will probably give the green light at around 37 weeks) to wait 2 weeks longer. And yet, I absolutely do not want to do that. I need to be disciplined enough to try to do the right thing when the time comes.

Wednesday, March 12, 2014

Checking in: 33 weeks

We had the weekly ultrasound a few days ago, and things looked good: this is one seriously long baby, the femur length is at the 95th percentile! Weight-wise, this baby is sort of small (20th percentile) when compared to the US growth charts, but he/she is bang in the middle in the Indian population charts. So yep, everything looked good there.

Went to Hiranandani Hospital. Chatting with a bunch of surrogates made me realize one thing: Indian surrogates (in Mumbai anyway) don't seem to get epidurals, even if their labor is long and painful. I asked the handler like 4 times...nobody gets epidurals? She was like, nope. Just FYI, if I were going through a delivery at the same hospital, I would definitely get the choice of an epidural. They are common here for all the "regular"  upper middle class moms. When I told my mother about the surrogates not getting an epidural for the pregnancy in which the cost of an epidural is a mere drop in the bucket compared to the other expenses, she just sadly shook her head.

If J goes through labor, I'm going to make sure she gets one if the labor is protracted. However, around 75% of all surrogate deliveries are C-sections. J asked me wistfully if she could get a C-section because the last time had been so rough. I was like...but you suffer AFTER the procedure, instead of during. And she was like, well, yes, that is true.

From my end, I definitely don't want a C-section; what I want is for J's water to break naturally after she is safely ensconced in the hospital, so she does not have to go through the more painful induced labor process. I highly doubt that fate would cooperate like that.

After a 2-hour wait for me (a 4-hour wait for the various surrogates gathered), the doctor saw us.  Her BP was on the high end: 130/84. Gotta start monitoring that.

Slightly nervous now.

Wednesday, March 5, 2014

Thinking ahead (on vaccination strategies)

Today marks 32 weeks. Rather unbelievable. I've started buying stuff, which freaks me out quite a bit. I have to make a significant purchase/decision soon: the mattress. The options for cribs in India don't seem so bad. The options for mattresses suck. They are all made of PVC foam or are "antibacterial,"which is just a fancy sales gimmick, but is actually far from ideal. And pillows. OMG, does the Indian baby market abound in these. I shudder to think who would buy, for example, this product. Despite the rather appalling lack of consumer awareness, surprisingly, the incidence of crib death is lower in India than that in many other countries.

So I'm going to have to buy my mattress from the US, or get it made myself (you can get gaddi makers to do it, and could could source cotton materials yourself). For multiple reasons, I would rather go with option #1; right now, I'm thinking Naturepedic. If anybody has any thoughts/ideas on this subject (also on making your own mattress; I'd love to, but I have little know-how), I would love to hear them.

A few days ago, I told a really close friend of mine, who had a baby 6 months ago, that I was going to be having a baby soon. She was my roommate when I first started trying over 3 years ago, and was incredibly supportive then. Her reaction when I told her now blew me away: she offered to express and freeze breast milk for me! I'm not going to turn this incredible gift down. If I get even a few days worth of partial feeds, it would make me feel so much better. She is such an amazing friend.

Finally, we come down to a controversial topic: Vaccination. As an immunologist, I was initially appalled at how early vaccinations start in the US. Then I compared the Indian schedule to the American schedule, and I realized that the American one is actually a tad better in comparison. In the US, only the HepB vaccine is given at birth; here 3 vaccines: HepB, BCG, and the Polio vaccine is given at birth. All three are for diseases a newborn is unlikely to catch in today's day and age, especially if you come from a situation where the baby will be kept mostly isolated after birth, which would cut down the TB risk. I am sure these were designed keeping the poorer section of the populace in mind, but none of these is anything my baby is at risk for.

Indian rules aside, overall, vaccine policy in the world is rather flawed, although everybody who attacks vaccines seems to be making the wrong argument. I spent a good part of my career studying the cells that the vaccines are directed towards, so every time somebody told me about a a bunch of vaccines that would be given when the baby was 6 weeks old,  I would get a headache, because the immune system of young infants is not yet ready to optimally respond to a vaccine, because it is still developing. If you give a 6-8-week old baby a bunch of vaccines, it will not result in optimal protection; very far from it actually, it could mildly hamper the immune response towards the targets. Additionally, if the immune response is not optimal (which is very likely if 6 vaccines are given together at 2 months of age), your child may be protected for the next few months, but despite boosting, may not efficiently develop long lived protective immunity in the form of memory B cells, which is supposed to be the goal of a vaccine. All this is covered very well in this Nature Reviews Immunology article; I would urge the doctors (especially any pediatricians) visiting this page to read this.

 Moving away from the efficacy of multiple vaccines given at two months of age, vaccines given at birth are even worse, and are most likely utterly useless, for multiple reasons. One important one is that they will most likely be neutralized by the antibodies that the mother passes to the baby in the last trimester. For example, most mothers have strong immunity against Hepatitis B, and their antibodies, which protect the baby for about 20-30 days, will most likely neutralize the vaccine that is given at birth. So why bloody bother giving the vaccine at this point?

Another downside is that the vaccines themselves are a terrible jolt to the system. There is  no concrete evidence to indicate that the vaccines cause autism or have any long term side effects, but still, to err on the side of caution and also to ensure that they work in the way they were intended to work, I would rather wait till my baby was older (atleast 3-4 months) before I started vaccinating, and then go for a very staggered schedule, with longer intervals (3 months maybe) between boostings.

Yet, I understand the dilemma faced by both parents and medical officials: what if you cannot isolate your baby, and you have to travel with them, or send them to daycare regularly from an early age? If you are a parent with a micropreemie, the situation would also have to be handled differently. 

But, when it comes to full-term/close-to-term babies who can stay home and relatively isolated for the first few months of life, there is a better way available to do things.  Yet, the truth that doctors will not tell you (possibly because they do not understand it themselves; the only ones who would would be the immunologists who have an in-depth understanding of B/T cell biology) is that that very early vaccinations produce crappy/inefficient immune responses, and the longer you wait to vaccinate, and give fewer vaccines at one time, the better the immune response and the efficiency of the vaccination. Keeping the last point in mind, there is one alternative vaccination protocol from Dr. Robert Sears that has been doing the rounds; It is popular, as well as controversial. My opinion is that some aspects of this protocol (giving only two vaccines at a time in the first year of life) may produce better results than the regular protocol. It would be interesting to study antibody titres in babies subjected to the two schedules. Maybe that would put an end to all the bickering and the uncertainty. However, I am not too enamored of the dragging out of the vaccinations in the Sears protocol after the first year of life; somebody mentioned that even the most well meaning of parents could just lose track of the vaccinations if they are being dragged out, and that seems like a fair point. After babies are no longer classified as "infants," their tolerance and their immune robustness is closer to that of an adult, and the kid gloves (ha ha) could come off partially at this point. This is especially so after 2 years of life, when they start responding well even to polysaccharide vaccines. But this is an incredibly complex area, and my simplified take does not even begin to touch on some of the other issues (for example, is it better to get chickenpox as a kid, or be vaccinated against it).

In my own case, if I can manage relative isolation (no daycare/travel for the baby, and as little contact with the outside world for the first few months of life as possible), then I'm going to delay the start of vaccinations for as long as I possibly can (maybe up to 4 months). Ideally, I would have loved to start vaccinations only after the baby crosses a year of age, but unfortunately, we cannot live in a bubble for that long. There are additionally multiple ways to ensure that your baby's fledgling immune system is as optimized as possible, but that is a topic for another post.