My overall review for Dr. Malpani

One has three basic requirements of an IVF clinic:
1) that they design a good protocol, either for an IUI or IVF. This protocol can (and should) be tailored to fit your medical history.
2) that they perform the retrieval and transfer competently
3) that their embryologist is competent

Then there are the minor points that contribute to the overall picture: How are the nurses? How is the attention of detail of both the doctors and the nursing staff? What is the sensibility of the doctor?  What is their honesty/fairness level, medically and financially?

Let us start off with what the Malpani Clinic does right.

• Retrievals and Transfers: Both the transfer (by Dr. Aniruddha Malpani) and the retrieval was done by Dr. Anjali Malpani were competent and well done.  From all accounts (my mom was in the OT with Dr. Anjali Malpani when she was doing the retrival), she is very competent and thorough. I also thought she has a pretty good bedside manner when she was doing the scans. 
• Embryology: While their attention to detail I certainly found lacking, from all accounts the embryology lab is competent; I had no cause for complaint overall. My embryos grew well (in the second round), and survived the freezing and thawing. 

Moving on to the issues 

Poor protocol design, and  not a great understanding of biology: When I first came to the Malpani clinic, I relied on him to design the protocol. His choice of protocol for me was the micro-dose lupron protocol. I remember being surprised by this: when we sat down during our initial discussion, and I assumed we would start BCPs that cycle (as in the long agonist protocol) and start the stims the next one. He told me, no need for that, come back when you start your period, we will do an ultrasound and start lupron and the stim drugs then. Like an utter idiot, I trusted him and liked the thought of avoiding BCPs and many injections and did no research. At that point, I had not bothered reading up and understanding IVF, and I did not know then, as I know now, that this is usually picked for poor responders or women with a DOR.

Long story short, the protocol he picked fried my eggs. My response to it was horrible. I became convinced I was a poor responder, and was so lost and confused because I had not expected to be one, given the fact that I got so pregnant so easily on unmedicated cycles, with great progesterone and beta-HCG values.

Some of the issues in the protocol were evident to me immediately, and later, when I talked to two other doctors (Dr Sher and Dr Bohrer at RMA-NJ) and both of them showed surprise that this protocol had been picked for me  and mentioned that their approach would be very different. After I read up on IVF and understood it well enough to design my own cycle, I came to the conclusion that yes, the microdose lupron protocol should almost never be the one to start with, especially in younger patients with good AFC/AMH levels: it could be tried after the somebody does badly with the two traditional protocols (long agonist and antagonist).

As a note, I do not hold him responsible based on the result of the IVF, I hold him responsible for the poor choice he made. If he had picked either of the logical choices (long agonist or the antagonist) and things had gone badly, I would never have held him responsible, because there would have been nothing wrong with the decision he made. But the microdose lupron protocol for somebody like me? Abysmal, incomprehensible choice. And boy, did I pay for it. I was not a poor responder, but the protocol Dr. Malpani picked for me made me a poor responder. What I lost here: time and money, and not to forget the emotional turmoil I went through. Trusting him blindly, like a normal patient trusts their doctor, cost me greatly.

Other things also bothered me was his usage of menagon, especially at high doses (300-450). Menagon contains equal amounts of LH and FSH. Now, if you give somebody 450 IU menagon, they are getting 450 IU FSH, but they are also getting 450 IU LH every day.This is very unlike the natural cycle, where LH stays low throughout, and then peaks just before ovulation. In my opinion, this is ill-advised, because different people have different sensitivities to LH. Many people can tolerate it, but for some others, their egg quality may be better if you give them follistim with very low doses of LH. In some people (especially those with PCOS), more LH may be detrimental. His protocol ensured I got a large blast of pituitary LH on day 2/3 when he started my lupron, and then followed it up with lower amounts of LH from the menagon he had me on. When I applied the theory that increased LH was the problem while designing my own protocol (all I did was to ensure that the LH was low until just before ovulation), my response was superb. That was all it seemed to take for me to go from a very poor responder to an excellent responder. Yet, when I put forth all of this to Dr. Malpani, he showed a total lack of receptivity to the point that LH should be high only at certain points in the cycle, not throughout. This also reinforced my opinion that his grasp of biology is less than what it should be.

Another very important reason that many big-name doctors seem to avoid menagon: This is FSH and LH extracted from urine, and there can be batch-to-batch variations. During my first cycle, I remember the Malpanis remarking  that they were seeing excellent results because this batch was so potent. Later, when all the pieces fitted together in my head, and I found the mentions of doctors avoiding menagon because of the batch-to-batch variation, I remember thinking: what about the poor saps that get a less potent batch?

One of his questions drove home the fact that his understanding of cell biology, and biology in general, is rather rudimentary: He used to ask my opinion on a lot of things, and one day, he asked me across the curtain post ultrasound: why on earth do people use Coenzyme Q10 to improve their egg quality? It has nothing to do with the eggs after all. At that point, I was really preoccupied and just mumbled a  vague response. However, when I thought about it later, I pondered the fact that he had asked this, and was appalled, because it reflected a lack of understanding of cell biology, which an RE should have, given that their speciality is eggs. You would need to have a basic understanding of cell biology get the connection between mitochondrial health, its possible decline with egg aging and the connection between mitochondrial efficiency, free radical production, chromosomal division, and the eggs ability to multiply and be fertilized after. Sigh. For anybody who is interested, here is the take from an RE who DOES understand the theory behind this.

So overall, from what I have seen of Dr. Malpani, his understanding of biology seems to be in very broad strokes, while missing most of the subtleties. And, in my opinion, based on the fact that he picked the microdose lupron protocol for a patient like me, his judgement is highly questionable.

Lack of attention to detail: This guy is very high-energy, and while he is talking and his brain is jumping from topic to topic, he really does not seem to pay attention. I had told him, multiple times on multiple occasions, that I only wanted to do a single embryo transfer.  At no point in those conversations did he stop and tell me, well, we freeze our embryos in pairs. At no point did he note down my wishes and convey it to his poor embryologist. In an age where many forward-thinking doctors and clinics are actively encouraging their patients to go for a single embryo transfer, he heard my wishes and ignored them entirely, and forced me into a corner by freezing most of my embryos in pairs. I thought I could have gotten out of that corner by starting a cycle with two surrogates and transferring one embryo to each of them. When I told him this idea a long time ago, he did not tell me it was illegal, and we started a search for two surrogates, only to abandon it for other reasons later. The doctor at Surrogacy India later enlightened me that I had no chance of doing this.

Anyway, this point has become moot as this guy refused to transfer my embryos to another clinic and has destroyed (or is going to destroy) them instead(!!!!!!!!!!!!!!!!!!!!). Details in my other post.

Lack of thoroughness when screening the surrogate: When taking my surrogate's history, she told him that she had only been a surrogate once before. After I spoke to Surrogacy India during the pregnancy, I found out she had lied, and had gone through surrogacy twice before. I do not know what communication, if any, took place between him and surrogacy India, but If i had a surrogate coming to me, based on what I know of surrogacy in India, a large part of my time would be in verifying her past medical history. In this case, all he would have to do to check out her history would have been to pick up the phone and call SI.

Another thing that shocked me (and the two other doctors in the room when we found out): He knew she was Rh-negative, and his extent of investigation there was to ask if she had gotten the anti-D shot. This is to a semi-illiterate woman who does not know her own medication. To her, an injection is an "injection." He never bothered doing a simple blood test to make sure she was not immunized to the Rh antigen before implanting my incredibly precious embryos into her (I checked her file, there was no screening test for anti-Rh antibodies at the time of surrogate selection). If anything had happened and had she been immunized, my child would have been in very real danger.

Lack of basic medical ethics: Many of you may remember this, but Dr. Malpani, without asking my permission, decided to give a newspaper reporter my blog address. That reporter decided to put up my blog address in a newspaper article that was featured on the first page of the Times of India, which is the biggest bloody paper in the country. I asked two other doctors whether they would give a patient blog address to a reporter, and both said: "NEVER without clearing it with the patient first." I'd call this basic common sense.  He did not bother apologizing or even acknowledging anything after this incident.

Behavior during the pregnancy: As this pregnancy progressed, he became incommunicado and absolutely non-cooperative, and even obstructive in the end. The surrogate's pre-pregnancy TSH was 2.7. I wanted the TSH rested during pregnancy, and as an added precaution, I also wanted to have her tested for anti-TPO antibodies. He refused to do both tests, even though I was the patient and was paying for everything. He would not even draw blood for the TSH test. When I requested him for all the tests (TSH, T3, T4, anti-TPO): he emailed me to say  I am a RE. I cannot hence test for anti-TPO antibodies because it is not one of the tests we run. This was so utterly ridiculous,  because REs around the world routinely order tests for anti-TPO antibodies: my RE in San Diego ordered it for me, without my asking. Dr Malpani may not know this, but thryoid dysfunction forms a significant part of reproductive endocrinology.

He also made life utter hell for us during the last month of the pregnancy, and my daughter was born with an infection that looked like it started in utero. Details in this post.

Financial dealings: Major, MAJOR issues here, please see my other post on this.

In summary, for IVF, the Malpani clinic is a mixed bag.

In the plus column, he has a competent setup (as far as egg retrieval and the embryology lab goes) and is extremely approachable when you start, and can be easy to work with when he is not angry with you and trying to block everything you want: the second round of IVF, I designed my protocol from start to finish, and it was an amalgamation of many tricks and studies, and to give him credit, he put aside his ego completely and let me do it.

In the minus column, to me, he seems to be the weakest link in his own setup: my end impression of him was that himself is more of  businessman/showman who talks a good talk, but may not be able to design protocols very well, has poor attention to detail, and is definitely more financially unfair in his charges/dealings than others in a similar line of business (example, Surrogacy India). Additionally, as my experience proved, when unprofessional, he is really unprofessional (giving my blog to reporters, not responding to crucial emails, refusing to transfer my own embryos and sperm vials (!!!!!) to try to get me to pay a charge that was unfair and not specified upfront. He has emailed me that he has destroyed the sperm vials that I asked him to transfer (!!!). Unbelievable, and I don't think he realizes the amount of trouble I could have bought to his door for refusing to do this, or for not transferring my embryos, which could have been my children! Also...which doctor gives a patient's blog address to a newspaper reporter without clearing it with that patient first?

His equipment is also not very high end (ultrasounds on his rather ancient ultrasound machine provided conflicting reports from that from newer 4D  ultrasound machines, causing no end of confusion). He pooh-poohs embryoscope usage and was extremely reluctant to use PGD and CGH microarray analysis.

Should you go to him if you wish to do IVF plus surrogacy? I would really not recommend him based on my experience. Towards the end of the pregnancy, we were counting down the days before we could be free of him, and he would have no more control over my unborn child's care.

Should you go to him for IVF?  Up to you. His clinic may be better than a lot of the others in many parts of India, but it is definitely not ideal. All the things that are good about his clinic (good embryology lab, decent skills for retrieval and transfer) may definitely be found elsewhere as well in Mumbai alone. It is definitely possible that their charges may be more fair than that of this man, especially if you are paying in dollars. It is also possible that the protocol design skills may be better.

As a side note, I have heard some horror stories about medical ethics (the use of somebody else's embryo!!) coming from IVF clinics in delhi, so unless you have a personal recommendation or a very good reason to go to a Delhi clinic, know that you are dealing with a very unknown entity.

Here are two options in Mumbai that address,at a surface glance, some of the lacunae in the Malpani setup:

Dr. Pai at Lilavati Hospital: I went to him for a consult, and I administered a test of sorts: I gave him my history of easy pregnancies and loss and my AFC/AMH values, and then asked him what protocol he would start me on, and he said "Antagonist." That was the right answer, and to me, that definitely trumps Malpani in the crucial protocol-design department. Dr. Pai also was very gung-ho about PGD analysis by CGH microarray (he had the setup in place that I had desperately wanted at the time of my IVFs), and also pushed embryoscopy while doing Day 3 transfers, which to me makes sense. If you are going to do a day-3 transfer, just going by embryo morphology to pick the best embryo out of 10 or 12 embryos is foolish, when you can weed out a lot of the poorer candidates using an embryoscope, which obviously considers multiple parameters and can give you far more information than embryo grading. Very importantly, this can also reduce the number of embryos you have to transfer at one go, which may result in a less complicated pregnancy.

Dr. Pai also (very sensibly) refuses to handle any of the aspects related to Surrogacy, and outsources this to Surrogacy India.

Out of curiosity, I googled "Dr. Pai reviews" and could not find any red flags. This morning, I googled "Dr. Malpani reviews" and found a page addressed to complaints about this doctor. Sigh. I can only smack myself on the head so much.

Nova IVI: This is a branch of a Spanish Infertility clinic that now works in India, and has branches in many cities. I can only talk about the Mumbai branch since I met the doctors there. I did not quiz the doctor I met on protocols, so I cannot comment on that, but what this setup would offer is cutting edge technology. Their clinics provide the CGH microarray technology, and they also offer embryoscopy and the rather interesting Endometrial receptivity array test. Dr. Pai also pushed for the ERA test.

However, NOVA IVI is a huge setup across different cities: be aware that local doctors could influence how that clinic runs, so this may be more a wild card than Dr. Pai's setup. Google the doctor you will go with before starting.

Overall, Nova IVI definitely more bang for your buck than at the Malpani setup. Also, whatever technicians they have would be very skilled at embryo biospy if you were going for PGD testing, which is a pretty important consideration for me.

The Mumbai Nova IVI clinic also works with surrogacy agencies (SI as well as Little Angels). Like I said, there are few doctors who put up their own surrogacy website and claim to handle all aspects of surrogacy, while delivering what I had to endure. 

My surrogacy experience with Dr. Malpani (Part 1)

General Overview:

In an email shortly after my first IVF, Dr. Malpani introduced me to his surrogacy program. What I did not realize then was that most other REs in Mumbai do not run their own surrogacy programs, they outsource this to surrogacy agencies (examples: Surrogacy India, Little Angels), who, atleast going by Surrogacy India’s program, do a very thorough job of screening and caring for their surrogates.

Dr. Malpani charges a similar amount of money as them. This is the way he runs his surrogacy program: he has found a "handler," who has been a surrogate herself in the past. This appeared to be an uneducated woman. She finds and recruits surrogates and takes them to him. After he selects a surrogate, the handler seems to handle it all: she takes these women to their appointments, liaises between the OB's clinic and gets the reports to Dr. Malpani's clinic eventually (there seems to be a lag of 1-3 days). I was not given copies of the test reports up front. I always had to ask, sometimes repeatedly. To my great shock, this woman also informed me that she gives the injections, rather than a trained nurse, as I would have expected. Trying to get her to convey what injection she had to give was a fun experience all right, and we ended up with a serious case of crossed wires about the steroid shot. From my experience, this woman, who basically coordinated the pregnancy handling was unprofessional (she would avoid my phone calls for days when she did not want to talk to me), missed appointments (she wanted to skip out on the 36th week checkup; I spoke to the surrogate and made sure she turned up, and on that day, we discovered her BP was high enough to warrant immediate hospitalization) and had no medical know-how.

Surrogacy India'a (SI) program is something I like a lot. They have an immensely large staff dedicated to the various aspects of running surrogacy, and there are 2 doctors who have no other job other than look over the pregnancies. They have housing on their premises, and make sure that if the surrogates live at home with their family, they relocate close to their office and can be mobilized rapidly (they have an ambulance on site to ferry people to Hiranandani hospital). Every blood test/test report is immediately uploaded and is made available to the biological parents through their website and they have an electronic record available at all times (to this day, I have only seen J's file and made copies of certain things, but do not have all reports of when she was pregnant with my child). SI staff (who, importantly, are not "friends" or from the same community as the surrogates) conduct “home visits” to check if the surrogates have clean drinking water, etc, and they keep checking throughout the pregnancy. This is important because there have been instances where women have become Hepatitis E-positive during pregnancy due to unclean drinking water and miscarried. They also check the husbands every 3 months for STDs (this is really important and sensible, IMO). They offer very strong and robust oversight over the entire program, and their pregnancy screening (which appears to have multiple doctors at very reputed hospitals running and reviewing the ultrasounds) is very through. They also handle post-pregnancy finances (for example, if you want to set up an educational trust for your surrogate’s children, they will handle the disbursement of the finances).

Dr. Malpani, as stated above, seems to have a staff of one to handle the pregnancy, and it is a woman from the same community as the surrogates. He assumes the OB will handle all the medical aspects after the 3rd month. In contrast, SI has assured me that while the OB does a lot, the two doctors who oversee the team do a lot of monitoring and keeping tabs throughout the pregnancy. One of the doctors there tried to impress upon me that this very involved approach pays off- the SI babies apparently have a higher weight at birth, and rarely require NICU admissions for medical reasons.

Initial screening:

In the case of the second surrogate chosen (who eventually went on to carry Gauri), she had told him that she had been a surrogate once before, with Surrogacy India. I spoke to them and accidentally found out that she had been a surrogate twice before with them. This was her 5th child, not her 4th, as she claimed. 

What SI repeatedly impressed upon me is that surrogates lie to try to pass the screenings, because they desperately need this money. Hence such responsible agencies are very through in their screenings to prevent a potential disaster from unfolding (such as a surrogate who has carried 5 babies already and is trying to carry a 6th, and runs into the risk factors associated with the multigravida state). It is, IMO, imperative that the doctor doing the screening be exhaustive in his/her investigations to verify the past medical history.

What Dr. Malpani told me (and what went on official record) was that she had been a surrogate only once before. This was contradicted by my verbal exchanges with Surrogacy India, the OB-GYN (who told me this was her third surrogacy and 5^th pregnancy, not her 4^th), and finally, J herself, in a conversation after the birth.

Additionally, my surrogate was Rh-, and he put Rh+ embryos into her. On realizing this by accident (!!) due to the astute questions asked by the excellent Dr. Bhansal at Mediscan, I asked for and checked her initial blood reports: there was no report testing whether she was indeed still unimmunized against the Rh antigen after 4 prior pregnancies. If she had been immunized, it would have possibly resulted in a pregnancy loss.

Pregnancy management: 

During a pregnancy, the nuchal translucency screening for Down’s syndrome is only accurate if done between 11 weeks and 14 weeks. If Dr. Malpani was aware of this, he did not impress it on the handler, who of course had no idea. She took the surrogate in to Hiranandani for the first time only at 14 weeks (based on the ET date), and she would have missed the window for accurate screening. Thankfully, I had arranged for the screening myself between the 11^th and 12^th week, and had paid for this necessary test (as I had multiple others) from my own pocket.

Other things that Dr. Malpani did also vexed me: His receptionist emailed me to tell me that the next payment was due at 20-22 weeks. A few days later, Dr. Malpani emailed me to tell me that this payment "due at 20-22 weeks" was now overdue! We were 19w1d along on that day! You had to laugh, because otherwise you would cry.

Communication was also rather painful: his fee schedule was such that his own receptionist could not seem to understand it. He initially emailed me that I have to pay 9000$ in three installments of $3000 each. I paid the first one. At the time of the next installment, his receptionist emails me to tell me that my next payment of $2000 was due (she thought the total payment was only $6000---can’t blame her given the ambiguity of the schedule, which I will be putting up in the next post). It took several phone calls to sort it out, and at one point, she told me Dr. Malpani was charging me the fee for twins, which is why the amount was higher: I nearly pulled my hair out at that point. 

After our relationship turned hostile because I had expressed my surprise over the way things were handled and anger over multiple issues (I also had the pregnancy jitters and nerves that made me fly off the handle far too quickly, and that was my fault) I came up against a wall. Emails were not returned, questions/concerns were ignored entirely. The only way I seemed to encounter some action was to write a blogpost about it.

The shit really hit the fan towards the end of the pregnancy. J lives in a slum area in a dwelling called a chawl. It is very difficult to get cars in and out of in case of a medical emergency. Her bathroom is outside, and I was honestly rather nervous about her moving around at night when she was so large and unwieldy and groggy at night: I was afraid of a fall and a placental abruption. It was also summer, and one day out in the country with no air conditioning had nearly given me heatstroke, and I was nervous as to how she was coping at nearly full term. I was also concerned about UTIs at this late date, given that the sanitation is far from ideal. All in all, I was trying to get her to move for the last 2-3 weeks into safer and more comfortable housing. Most surrogacy agencies, given the poverty that the surrogates live in, have some arrangement of housing in case of emergencies, and for the final weeks if required. As a standard policy, SI told me that the wishes of the biological parents are always taken into consideration while deciding where the surrogate will spend the final weeks.

As mentioned previously, Dr. Malpani offers one uneducated woman to coordinate the whole process, in combination with his oversight of the pregnancy (you can decide the state of that based on what I told you above). He offers no housing to house surrogates that I was made aware of, no means of transport in case of an emergency (J would have had to hail a cab in that neighborhood and make her way with the handler, who was pregnant herself). Anyway, given the lack of acceptable housing and knowledge of her home situation, I was happier with the surrogate spending the last 2-3 weeks in the hospital where she would be well monitored. I had discussed this with the surrogate, and she told me she was willing to get admitted on the 2^nd of April, which would be the 36^th week. However, when we went in for the 35th week checkup, her blood pressure was high, and the OB-GYN admitted her for monitoring, as per her standard policy. Note that the surrogate was not happy with this. She was also started on IV antibiotics for a suspected vaginal infection, and this was continued for around 4 days. I wanted the surrogate to be in the hospital till delivery (I suspected we would not get very far past 37 weeks).

One day, I tried to contact the surrogate to just see how things were going, and I could not get through. Nobody took my calls that day. Frantic, I finally texted the OB, and apparently verbal exchanges between the OB and Dr. Malpani had taken place, resulting in the surrogate being discharged “Discharged Against Medical Advice.” This was what the OB told me, and she also informed me via text, that Dr. Malpani was aware of it. He had not bothered communicating all this to me. I literally needed sedation that night, I was that terrified. My state of mind just did not seem to matter. Importantly, he gave me no information either about the discharge or about her state of her health (I did not know if the BP had settled, or whether her antibiotic treatment was complete). Things were only explained (and became less frightening) when my mother went and talked to the OB the next day, and she explained that she had taken all possible precautions before letting the surrogate be discharged against medical advice.

 Since I was not on good terms with Dr. Malpani at this time, my mother, who is a doctor, called him about when J could go back to the hospital. My mother, who was a lot more level headed and far less paranoid than I was, was also having nightmares about J, who was a 5^th gravida, delivering in a cab in the middle of the night, as labor can progress very rapidly in these women. When my mother conveyed these fears to Dr. Malpani on the phone, he responded that birth is a natural process and women have been delivering for millennia without OBs hovering over them (!!!). Obviously, this did not reassure her, and she emphasized that she wanted the delivery to take place in a hospital “natural birth process or otherwise.” He also famously told her that the weekly checkups after the 36^th week point were excessive (!!!). Nonetheless, he agreed that she would present herself back at the hospital at her weekly appointment, which coincided with the 37^th week based on the embryo transfer date. Overall, Dr. Malpani’s philosophy (that she should stay home for as long as possible, and only make her way to the hospital when “labor was eminent”) filled us with utter dread, and to our utter helplessness, he was the person calling the shots at that point. Waiting for that checkup date to arrive was an experience no one in my family ever wants to live through again.

Ironically, while Dr. Malpani was pushing for a natural birth, the surrogate herself had no intention of a natural birth, and asked for a c-section. This was a really comic situation, if you took away the very high stakes.

While I am also very much a fan of natural delivery over c-section, the surrogate’s wishes had to come first in my book: to try to get an unwilling woman to go for a vaginal delivery is a ridiculously bad idea, in addition to being unfair to her.

This aside, it was rather amazing that what I (as the biological mother) wanted as per day of delivery and plan of action apparently figured so little with Dr. Malpani. Our situation was even more ironic considering that the system is supposed to work in a way where the person who sets up the surrogacy program is supposed to help the biological parent, communicate the day-to-day events clearly, take their wishes into consideration (this is their child after all), and ensure that the process is as less tension-fraught as possible.

The birth:

What happened on the day of delivery: On the day she was discharged against medical advice, the OB ran a high vaginal swab that was clear, showing no infection. When she returned for the agreed-upon checkup one week later, she had a greenish vaginal discharge, which is normally indicative of a trichomonal infection (an STD). Thank god I did not know this when the OB told me about the discharge.

Alarmed, the OB planned a C-section, which also coincided with the surrogate’s wishes. After the birth on the same day, my baby had excellent Apgar scores and met all the benchmarks of maturity, but had rapid breathing and grunting which is sometimes observed after a c-section. They admitted her in the NICU for monitoring, expecting that it should clear up within the next 12 hours. When it had not, the pediatrician suspected infection (he says he sees this sometimes in babies born of surrogates), and preemptively started antibiotics.

Within 24 hours of being on the antibiotic, the respiratory distress had cleared, but a blood test showed mild sepsis. Given that this was an otherwise healthy and subsequently hardy baby, it seems unlikely to me this was a hospital-acquired infection, and seemed more likely that this was something unexplained acquired in utero. When I think about the fact that her vaginal swab at the time of her discharge against medical advice was clear, that she showed up one week later with likely an STD, and the fact that my baby had a respiratory infection that looked like it was acquired in utero, I get really, really angry. The universe and the doctors at Hiranandani were really watching out for this child, so it all ended well, thank god, despite the 4 pregnancies the surrogate had carried before this one, despite the Rh mismatch, and despite the infection that J apparently had in the end. I think getting Gauri out when we did may have resulted in us catching the infection at an early timepoint when it was easily controllable. And for that, thank you, forces above, and Dr. Soni (the OB) and Dr. Ahuja (the pediatrician).

I honestly very much wish I had known about the nitty gritty of surrogacy in India before I had started this, and today, I make this information available to you all. Make of all this what you will, but had I known what I know now, I would NEVER have gone to Dr. Malpani for surrogacy. I would definitely have been spared a ton of stress (especially in the horrible final three weeks), and who knows, my daughter may have not needed that NICU stay and those repeated invasions of her oh-so-tiny veins. The day they stuck yet another IV in her for the fifth time in one week, our hearts broke.

The next part will be the finances of surrogacy with Dr. Malpani: that definitely requires a blogpost of its own. 

My Surrogacy Experience with Dr. Malpani Part II: Finances and the aftermath

Dr. Malpani claimed that his fee schedule is very clear. Judge for yourself; see the original table below. For me, the repetition of the sections in red font created initial confusion. 

Anyway, the original schedule is the only thing I received from him before starting this process, and being utterly stupid and trusting of him at that point, I gave it no thought and barely spared it a glance. All I wanted at that point was a baby, and I did not stop to think and ask the right questions about these practical and monetary considerations. Had I done so, I may have spotted the red flags I saw later, and I may honestly have looked elsewhere at that very point.

Note that while knowing that I am an Indian citizen living in India at the time of treatment, he decided to charge me in USD based on my sojourn in America. He also did not fix the dollar rate: During the first part of my treatment, the rupee was stronger against the dollar, and I paid at Rs. 55 to a dollar. Then the rupee went on a crazy downward slide, and he then charged me at Rs. 60 to a dollar.

This struck me as rather unfair, especially since the service did not change, but the perceived value did. I honestly did not pay that much attention to the fact that he was charging me in dollars in the start since I never dreamed that the exchange rate he was giving me would change. When it did, and the unfairness (in my opinion) became blatant, I was stuck, because we were already well into the process. It was a pretty bad place to be in then, honestly.

Later, when I was talking to the people at Surrogacy India, I ask them what they do about this specific point, because I was not at all happy how this was handled by Dr. Malpani: They are apparently very scrupulous about charging Indians (with Indian passports) living in India in rupees, and if they do a rupee to dollar conversion, they have fixed it at Rs. 50 to a dollar. Kudos to them. 

How are the monies spent by Dr. Malpani? As I spent more and more time actually considering each sum he charged and each of his practices, I started to have serious issues with the way things were being done. I repeatedly asked him for detailed invoices or breakdown of the amount charged, and he adamantly refused at each point. In all fairness, that is his prerogative upto a point (we will discuss this later). 

So I paid because I had idiotically agreed to this, but it is also my right to try to analyze it retrospectively. 

To try to give you all an idea of his overheads, let me tell you all about how much blood work/ultrasounds in India cost. I got these figures from a local lab, NM Medicals, by calling them and asking them how much specific tests cost.

Note that he does use this laboratory for his bloodwork and also used them for ultrasound testing.

Full STD panel (HIV/Syphilis etc): Rs. 1700 ($28)

Prolactin: Rs. 500 ($8.34)

Beta-HCG: Rs. 600 ($10)

Routine Ultrasounds: Rs. 2000 ($33.34)

2nd trimester NT screen: Rs. 2000 ($33.34)

Triple marker screen: Rs. 2000 ($33.34)

PIO injection (taken from the Hiranandani Bill): Rs. 159 ($2.65)

(Exchange rate used for above calculations: Rs. 60 = 1 USD)

Given how laughably cheap all this is, I would not expect full prenatal screening and management (progesterone, other pregnancy hormone tests, Beta HCG tests, ultrasounds, etc) in India, from the first beta-HCG to the point of hospitalization at the end of the pregnancy, to exceed Rs. 40,000 (~$666), and this to me seems to be a *very* generous estimation.

So here are my explanations about the steps of the process- how much I paid, how much the surrogate got, and how much the medical care may have come to:

I have asked him multiple times where the money goes, and I get answers like "prenatal care costs a lot," (had to laugh at this one) or "we need to charge for coordinating services," etc. This last answer was when I asked him what he was doing with the balance that Hiranandani had repaid him.

How can monies charged for "antenatal care, ultrasound scans, hospital birth, etc" and "additional compensation of LSCS (c-section)" be reasonably diverted for "coordinating services?" when his fee schedule already includes sections such as “Registration fee” and “Surrogate Handler fee?”

He had no answers for this, and just said that he owed me no explanations. Uh, you do if you are asking me to cover hospital bills while waving a refund they gave you in my face!

At this point, I was planning to have my embryos and 2 vials of donor sperm transferred to another clinic, just in case I wanted to have another baby. I put in the request to have my biological materials transferred. He then refused my request to have my embryos and sperm transferred till I had paid him for the initial hospitalization (!!!!).

In this case, the amount he asked me to pay was utterly unwarranted, given I had paid all the stipulated fees and there was a large unexplained balance left over, in addition to the surplus he had retained from the amount supposed to go to the surrogate. 

Nonetheless, I don’t know what the situation would be if a patient defaulted on the bills they should have been paying, but I doubt it would involve the clinic deciding to hold their biological materials hostage: this is not the Wild Wild West after all; I would have thought that the SOP for a clinic then is to transfer the materials to the patient and send the unpaid dues to a collection agency or settle the matter via legal venues, but the biological materials would logically not be dragged into this process.

Nonetheless, such avenues apparently cannot be considered by Dr. Malpani, who thinks it is okay to release a patient’s private blog to a newspaper reporter without getting consent from that patient, or hold embryos (which may be her future progeny!) hostage to money. Amazingly, when I used the word “hostage” in an email and he agreed to it, and told me that I gave him no choice!

When all this happened and this man decided to hold my embryos/donor sperm samples hostage, he then demanded I pay storage fees that he had not informed me of in the past to keep the embryos that I wanted transferred with him, or he would destroy them due to “lack of space.” He was refusing to transfer my embryos while telling me he would destroy them because he had no room to store them! I looked at my options then. We went to see a lawyer, who advised me to go to the police to get my property freed, and then advised me to sue him in both consumer and criminal courts. The lawyer practically rubbed his hands together with glee at all this, because everything about these financial dealings was documented. We had the legal notice all drawn up to make him release my embryos, and maybe also go for punitive damages.

 My mother (who is herself a physician) asked me when this man has behaved so unprofessionally/vindictively (our opinions), and has clearly shown his willingness to make life as difficult for me as possible (again, no more than our opinion), would I trust that the embryos and sperm in his care would have been handled ethically and correctly, even if I forced him by legal means to transfer them? Would I want to pursue expensive fertility treatments using said embryos and/or sperm, when I had no guarantee that they had not been damaged while being in his care? My father also voiced the same concerns. My answer was I did not know, but anything was possible, given his behavior, which I would never thought he would be capable of, given our initial interactions.

Even if I gave up on my embryos and sperm (my parents make valid points, I think)---he keeps refusing to transfer them and keeps sending me emails that he will destroy them due to “lack of storage space” unless I pay up---I could sue him for monetary damages---these are 50% of my embryos from my second IVF cycle, and the donor sperm that I have paid through the nose for. This man, has, in writing, refused to transfer them, while citing limited storage space as a reason for destroying them (!!!) The mind truly boggles.

I could also sue him (in lawyerspeak) for the mental agony I suffered: I was insanely stressed out in the final month of Gauri’s gestation due to this man’s behavior and her discharge against medical advice. I was actually terrified for my baby’s safety and wanted him/her to be out of this man’s control as soon as was humanly possible. Then there is the fact that, after my surrogate went home with a clear vaginal swab against my wishes, she came back with a greenish discharge indicative of an STD, and the fact that my poor baby was born with what looked like a respiratory infection acquired in utero and required IV antibiotics for one whole week!

But I had an epiphany. One day, late at night, I was up with Gauri, I saw an email from him asking for money to store my embryos and sperm samples after refusing to transfer them. He was asking me to pay storage fees that I can never remember him mentioning before (I went through the emails to check). I was instantly taken to such an angry, stressed-out place. It is that place that I have gone to so often with him. This man has disturbed so much of my life….should I still let him be in it, making me angry for the next few years when our legal cases in multiple courts may drag out? The lawyer assured me that I would not have to do a thing and the case would be fought while requiring no input from me, but even then. Even if it was settled quickly out of court (I suspect it would be), I want to move on. My dad initially wanted me to sue because he does not believe in taking such behavior lying down. My mom has always been against it. She wants to avoid the ugliness this battle will bring, and she is a big believer in karmic retribution.

 A man who keeps part of the fees that he states is for the surrogate: what is your opinion of that? Compare his input and her input into this pregnancy: she, having puked her way through 9 months and doing the tremendous service of growing and carrying a child at the expense of her future health, gets only Rs. 250,000 from the nearly 10,00,000 I paid him, and not even all the money he had taken from me in her name. Is it fair?

Yet, I have my daughter, not because of him but rather despite him, in my opinion. Money comes and goes, but peace of mind is far more important. So letting go is what I am going to do now, for my own peace of mind. Of course, if he vexes me any further, there is always a legal process available to initiate.

When I write all this out, it seems like a bad dream. It scarcely seems possible that the person I met in late 2010 could have behaved in this way, but he has. His behavior with me aside, which most certainly is out of character for him in my opinion, there are several issues (financial and logistical) with the way this man runs his surrogacy program. Most IVF doctors in Mumbai are not running their own programs, they actually outsource it to an agency who have the bandwidth to discharge their duties properly, and I applaud every doctor who takes this responsible step. If you want to pursue surrogacy in India, I would strongly recommend going to one of them. I will next be writing a separate review about the Malpani Clinic for IVF, and it is definitely more favorable than this, but even there, there are issues. I will be giving alternatives there, in that final post.

And as for me....I think I will have to end up getting donor sperm over from the US again, and doing a fresh IVF cycle if I want to try (at a much later point) for baby # 2. 

I just had to put all of this out there, so people going for surrogacy will not make the same uneducated, ill-informed choices that I did.

I also wanted to use my experience to say this: more of the money paid by the biological parents should go to a surrogate, with trusts being set up by the surrogacy agencies to distribute the money in installments (for example, educational trusts for her children).This is an important and constructive safeguard, because the husbands of such women may often use up all the money at one go, leaving these women destitute a short while later, forcing them to surrogacy again for another round. If you go for surrogacy in India, consider speaking to your agency and see if they can do this.

Update

My mom went and had a really long conversation with the OB, and got the true picture of what happened in the last few days. The situation (and getting the details we did not have) was reassuring: her bp was down, and she has been sent home with beta-blocker pills.

The reason I was stressed out yesterday was I had NO idea what was going on: I did not know if her BP had stabilized, I did not know if her infection had cleared, or even what sort of infection she had. Even if she has no access to decent care where she is now, she is atleast stable, and has promised to come back in time for her weekly appointment next week.

We now have to set a date for induction. Unfortunately, we cannot wait for long because her home environment is not the sort of place you want to be in, in the event of any emergency; I've driven there; getting vehicles in and out is a nightmare, it is far away from the hospital, and the local medical care is definitely un-vetted  and far from ideal (it is the local clinic in a seriously poor neighborhood). So we will have to pick a date for stuff to happen at or close after 37 weeks, which is the 9th.

I'll be so very glad when this is over, hopefully, with a healthy baby in my arms. This is when knowing the gender would have been a little useful in making a decision. Have you guys heard about the "wimpy white boy syndrome?" This is a term that may be somewhat hurtful if bandied about in the NICU; don't know who is the insensitive genius who came up with it. Basically, it has arisen from the fact that, in general, girls mature faster than boys, and the maturation in utero also depends on race. White male babies are the slowest to develop and hit all the landmarks (lung maturation and various reflexes, including the suck-swallow-breathe one). My baby is half-white, and if it is a boy, the odds of him needing those last 2-3 weeks more is higher, give the race-specific data. I have NO idea what the influence of his Indian genes would be: Asian, black, and white babies have been studied, but not south-east Asian. Irrespective of race, it is a girl, we could, in theory, breathe a little easier about inducing close after the 37-week-point. But bleh, this is India, so I can't bloody find out.

Sigh. But still, overall, I can breathe again. Yesterday was rough.

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.

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.

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.

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.

An epiphany

After reading many, many neuroscience studies (she has to edit them), a really good friend of mine told me she thinks she may have ADD (attention deficit disorder). She gave me a long list of symptoms, which made me go like, huh, I have a few of these issues myself: I zone out/am completely oblivious about the things that do not interest me, have a hyperfocus and a startling attention for detail for the things that do, and have major procrastination issues. Do I have ADD?? Probably not, given all the things on the list that I have to answer no to. But then again, to play the devil's advocate, maybe I do have a very mild form. One of the things I did not know how to answer: Do you have problems starting/finishing projects? I start/finish projects at work just fine (I managed to get myself a PhD, and that is the mother of all projects). But I am rather lazy outside of work. I don't do art. I don't volunteer. I don't cook/bake. I started vocal lessons and I abandoned them. Basically, I need to feel passionately about something to really work at it. Outside of work, the only place I have ever applied myself is in this area.

This morning, I woke up with a startling surety: I want to write a book on surrogacy in India. I never thought I would write anything other than scientific manuscripts, and this would be one heck of a project. After the birth, I had planned to write an in depth blogpost about what I have learnt, how you need to protect yourself when you get into this, and what needs to change for the betterment of the surrogates themselves, but what I have to say is so much more than what can go into a few blog entries.

Plus, if I really wanted to help people figure out the best way to proceed here, I would have to do so much more research, and the only way to work up to that level of commitment is to, well, commit myself to something big.

I think I am fairly well poised to be the person that provides a good accounting of this topic: I've gone through this firsthand, while living here, and the information you glean while going through this process is astounding. I've actually been to the hospital appointments and seen what happens. I have a clear idea about the financial side of things, and BOY, let me tell you, that stuff needs airing. The social aspects need airing. Surrogacy in India needs to be made more transparent, and change (through legislation) needs to happen, on many, many levels. I'd like to help that along, in whatever small way I can.

How DOES one go about this? I decided I would not do this half-assed. I would try to find an agent and a publisher, and then proceed. The first step involves putting together a book proposal. Then, I can go agent hunting. Ulp.

I hope this is a project that is not a one-day/month wonder for me, and will end up making a bloody strong case for me *not* having ADD. 

Checking in: 29 weeks

Random things in bullet points:

• My OB did get back to me after I finished my last post, saying that the surrogate DID need to be given the anti-D shot. Her assistant had not put that on the report. I then had to get the prescription ordered and get the surrogate to Dr. Bhansal who agreed to give the shot, and I reluctantly decided to get the ultrasound done too, because we were going there anyway. As I was on my way there (with slight trepidation in my silly heart as I was going alone for the first time to an ultrasound), my mom called and told me she had missed her flight and could make it there anyway. YAY. Thank you Universe.

•  I got proof that fetal biometry readings should be taken with a giant pinch of salt: Remember a while ago that I was mildly nervous that the head circumference (HC) was in the 12th percentile? This time, it was around the 50th percentile, while abdominal circumference (AC), which was around the 50th percentile the last time around, had now fallen to the 7th percentile. The only thing that has been consistent is the femur length, which is around the 80th percentile in each scan. So yeah, fetal biometry, not seeming hot, really.

• I also met a lawyer to take care of the legal stuff for getting the baby back to the States. Her first question was, where did you do your IVF treatment? She asked me this because there are apparently some doctors in Delhi who have put other people's embryos in a surrogate, and the poor parents have a bone jarring shock after birth when the DNA test revealed that the baby was not theirs. If you are a foreign national who planned to return to your home country with your baby, things get impossible, and there are families in limbo and babies in limbo because of this. Horrifying. She did tell me that she had handled some surrogacy cases coming out of the Malpani clinic, and they had been ethical and did not pull such horrifying cons. It is unbelievable that there would be doctors out there who would do stuff like this.

• The baby is just past 29 weeks now, and should hopefully approaching 3 pounds soon. Still so utterly tiny. Nearly every day, I google fetal survival and fetal weight and go over information I should be able to recite in my sleep by now. Previously, 28 weeks was my safety mark. Now, it is 34 weeks, where the only issue a baby may have may be an initial inability to suckle. It is also getting more real now: I've been my own person my entire life. It is terrifying and exciting that I may be getting a little person who will take over completely. 

• I told my aunt (who I am pretty close to) the news. The last time I told a family member I was trying this, their reaction was so ugly that I was badly burned and decided not to tell anybody in the family till the baby was here. In contrast, my aunt's reaction was wonderful. She just kept repeating that she was happy for me that I am getting a child of my own, but so sad that I had gone through 3 miscarriages and such a difficult journey by myself, and that she was just so glad that my parents had been there for me and had known all along. It was a lovely, lovely response, and I am so lucky to have her in my life.  

More glimpses of the realities of surrogacy in India

J goes to Hiranandani hospital for her routine OB-GYN checkups. I went with her for her very first checkup, and it was an intensely disconcerting experience. There are about maybe 12 surrogates gathering and waiting for anywhere between 1-3 hours. The OB-GYN's assistant shows up, and starts seeing this procession of women. They get a doppler check and their blood pressure and weight read, all while the next 3 patients are queuing up on the other side of the curtain while the first patient is in the bed. My mom likened it to the situation in the poorest, most strapped municipal hospitals, where she worked briefly as an intern

After that first painful experience where I waited over 3 hours for a 15-min cursory check complete with an ancient-looking doppler, I never went again, and instead only go with J to the wonderful, detailed ultrasounds that are run at the Mediscan testing center by the very capable Dr. Bhansal.

This past Wednesday marked 28 weeks, and J went for her checkup at Hiranandani. I contemplated going, but I decided to just trust the system and sent her off with all the reports and expected her to get both the Rhogam shot and much discussed mandatory steroid shot. Too many times where I decide to just trust the system here, it has turned out to be a Bad Idea. But that is a topic for another post.

I talked to J after the appointment and find that no injections were given. I then try to find out what happened. If you go to an agency like Surrogacy India, they have this system where all the reports are scanned and uploaded and are available online for the parents immediately. Here, with the Malpani Clinic, there is no such centralization. I've spent 3 days waiting to find out what exactly was done at that visit. The surrogate handler claims that she gave the report to the receptionist at the clinic, who then claims to have emailed it to me. No such email was received. The handler claims she reminded the receptionist of it again one day later, and that she apparently mailed me. No mail was received. I've asked the doctor what was happening, and have received no word. I am SO very glad that I have to deal with this system only for another 10 or so weeks.

But here is the deal: they don't give the steroid injection at the hospital, they only write the prescription for it, and expect that some local nurse or some local doctor will give it. In the case of the Malpani clinic, the person who gives the shots is no trained nurse, but the handler herself.  A little background on the handler: This is a woman who has gone through surrogacy herself, comes from the same socio-economic class as the surrogate, and is partially literate, but at best studied till high school. In general, these are not people who are professional and impartial: they may not above lying for the surrogate (remember the story I posted about the handler who helped a 42 year old surrogate propagate a lie that she was 28?). 

In this case, the handler will give the shot at her home.I have to pray that the she is atleast trained in sterile techniques. I asked my RE about this, but as with most situations, I got resounding silence.

Here is the other thing: J told me that Dr. Malpani thinks that the Rhogam shot at 28 weeks is not necessary. He has not bothered communicating this directly with me, and nor has the OB-Gyn.

The person who did seem to think it necessary is Dr. Bhansal. She is a fetal metal specialist who works with high-risk pregnancies. She is also the go-to person for detecting fetal anemia, and is also the go-to person to give transfusions in the situations where it does develop. I'll have to talk to her about the necessity of this again. I totally hear you guys about the many places that do not give this prophylactically at 28 weeks. The one reason why I'd be more concerned here is because this is a surrogacy, and J may not be as prompt as required if something goes wrong (if she falls, etc).

But, in happier news, we have crossed the 28-week mark. This is the point after which the complication rate falls considerably. I was supposed to go in for an ultrasound tomorrow, but my mother will not be in town. A while ago, my friend M told me to always take my mother with me to the ultrasounds, because she is my lucky charm. I take that advice very seriously: she has come for every appointment, and I'm far too chicken to go in without her now. The next ultrasound should happen in the middle of next week.  

Also, I want to celebrate the surprise (to me anyway, I had NO idea) pregnancies of 2 bloggers who are very close to my heart, who have stopped actively blogging. I think it is rather cool that two such very wise women who I thought were actually quite similar (in their outlook on things and their utter sensibility)  are so synchronized with their pregnancies; they both just crossed 24 weeks. Adele and Arohanui, so very happy for the both of you!

Checking in: 27 weeks

ICLW (IComLeavWe) collided with my vacation in the lovely Maldives. I naively thought I could comment from my phone while I was there (HA), but none of that happened. But anyway, I got away and snorkeled and gazed at insanely blue water to my heart's content. I got back last night and I'm still getting my bearings back.

Tomorrow marks 27 weeks. I have not bought a single thing for the baby yet. Not one bloody thing. Almost all my essentials need to come from the States. I have to figure out how to transport baby bottles (I'm going for stainless steel ones), a gzillion tins of Myenberg Goat's milk powder, and random things like DHA and vitamin drops and probiotics (formulating a very useful post on this one, which will most likely go up on my new blog) and blackstrap molasses. I'm far too terrified to go shopping for cribs and onsies yet. None of this feels real. I wish I could get the gender now---in some funny way, I feel like this would make all this seem a little more concrete.

Next week marks the timepoint to give the steroid shots, and J would also have to get the Rhogam shot or its equivalent. Turns out in India they have a monoclonal IgG shot available that is free of thimerosol, but it comes with its own wrinkles. I'm trying not to overthink and read the literature and decide whether to forgo the 28-week shot or not (there is some mild controversy here) or think of the nebulous risks of giving the shot, or the more easily imaginable repercussions of *not* giving it.I'm so PISSED that this pregnancy has to go through this easily avoidable issue. 

I asked my mother to talk to the NICU chief at the hospital that has the milk bank, and that conversion was again a door clanging shut in my face. No milk (they get super low amounts, apparently); they advised me against a wet nurse because even if you screen for diseases, you miss out on the window period where they could have contracted a disease but do not test positive for it yet.

All in all..hello formula from day 1, goodbye milk. I totally get the desperation of parents to get breast milk to their babies,if only for a few days.  There is a rather poignant/sad yet comical story I heard about a mother who was desperate to get her baby milk after she was born from surrogacy. She paid the surrogate a lot of money to provide the milk on the sly (the doctor had told her it was not in line with their policies), not realizing that the doctor had given the shots that made the surrogate's milk dry up. They apparently tried for
days and nothing happened. I can only imagine the collective frustration of everybody involved.

How important IS breast milk? Apparently, as a baby, I got no breast milk either (and maybe did not suffer at all for it, or mildly did---these things are impossible to judge), and the same will be true of my baby. It is impossible to gauge how your choices hurt or help things along, and I've been determined in theory to not beat myself up for things I cannot help...yet...that stupid urge to nitpick my choices and wonder about what the possible repercussions could be just does not go away. Parenting lesson #1, maybe?   

25 weeks...and a shocker

First, thank you all, all the people who "derlurked." I've saved the blog addresses of those who were not on already my reading list, and I look forward to reading your stories.

Apparently, there is an ultrasound every month from this point on. I was pretty darned happy to hear this, and I went back to Mediscan, where I've had all ultrasounds done so far. This is a lab chain that specializes in fetal testing, and the doctor here is one that I absolutely have come to like and respect. Her name is Vandana Bhansal, and I highly recommend this place (and her) for antenatal testing.

The ultrasound was going well. Dr. Bhansal then casually asked J what her blood type was. Both my mother and I were shocked out of our wits when she replied "B negative." Negative?!?! That means she does not express the Rh antigen. I do express it, as does my donor.

Rh- moms need specialized attention when they are carrying an Rh+ baby, because if there is is mixing of fetal and maternal blood, the mother will make antibodies against the fetal Rh antigen. Those antibodies can then cross the placenta and can cause fetal anemia and jaundice. Severe anemia can even result in fetal demise. If the mother is sensitized to the Rh antigen in one pregnancy, then all the later pregnancies are at risk. To prevent this, the mother should be given the Rhogam shot at 2 points: at 28 weeks of pregnancy when the chance of fetal blood mixing is 1%, and at delivery, when it goes up to 10%. If an Rh- mother has a miscarriage or trauma during pregnancy, the Rhogam shot is administered at that point as well.

Now, Rh negativity is sort of rare. It is high in the native American population, and rare amongst Caucasians. I thought it was rare amongst Indians as as well...I found out that it was more common than I thought, coming in at about 10%.

  

I never dreamed that a Rh- surrogate would be selected, especially given the masses of women available for surrogacy in this country that are Rh+. I never got the surrogates initial  screening tests (I had to literally  badger my RE for the initial thyroid testing results); had I seen this, I would have gone with somebody else. I'm shocked that I had to find out by accident, and I am so grateful that I got Dr. Bhansal; had I not, this may have never come to light, and I'm not sure if my RE told the OB specifically about this, or was aware of it. 

So here I am, having to live with this wrinkle as well. We immediately had her tested...as of now, she does not have antibodies against the Rh antigen; she has received one of the two mandated injections (the one given at the time of birth) following all her pregnancies. Not being the sort to take chances, we will have to administer the Rhogam shot during pregnancy as well. Now, Rhogam used to contain thimerosol (ethyl mercury) as a preservative. It was recently removed in the version administered in the US, but I don't know whether the older version is still in use in India. I'm stuck with the headache of ensuring that a thimerosal-free version is given. 

All was well in the ultrasound too: the thing that made me slightly worried is that the head circumference growth is lagging--it went from above the 50th percentile at 19 weeks to the 12th percentile at 25 weeks. The one thing that is absolutely ahead is femur length, coming in at the 84th percentile.

 I'm trying not to think about microcephaly, and I'm trying to remind myself that I have an absolutely tiny skull as well, and was apparently incredibly low birth weight (under 4 pounds at 41 weeks!!), and I turned out to be perfectly healthy. This baby is sort of like how I've been all my life---small head, long legs, so worrying is stupid,right?