Tuesday, July 15, 2014

Indecision 2014: TTC #2??

Major decisions need to be made, and I am just paralyzed.  As anybody who has managed to trudge through those  ginormous reviews that I wrote is aware, I had 4 embryos and 2 vials of sperm left over, and Dr. Malpani refused to transfer them and tried to charge me fees for then continuing to store them after I had expressly told him that I wanted them OUT of his storage facility. Sigh. I could have tried to force him via legal means to release my property to me, and while that would have been immensely satisfying on a few levels, we simply could not trust that whatever had been in his keeping would have been handled ethically, so thought it best to let it all go. Four embryos. A maybe baby. That was a very tough one, as you all could imagine. I just have to keep telling myself that if a life is fated to be, then it will be, otherwise there will be roadblock after roadblock.

But now, if I want to have a second baby, I would have to get fresh vials from the US (which would cost me a pretty penny), do an IVF pronto (because my eggs were already this screwed up in my early 30s), and freeze the embryos. In all this rampant indecision, I know one thing for sure...I do not want baby #2 for atleast 3-4 years, because as soon as G is old enough, I have to move back to the US and try to get back to research and the life I knew, because god knows I miss it all. Currently I quit my fulltime job with the company I was with, and am just working as a freelance lifesciences editor from home. It has the potential to be pay very well, but I think  getting dressed, going out, seeing people, and doing my own research is rather important to my own sanity in the longterm.

The thought of another IVF frankly makes me want to whimper, and the worst part is I am not even sure I want another baby: I have a ton of help in taking care of Gauri, and yet, an utter joy as it is, the lack of sleep and sitting for hours with her on a soft bed are telling on me. I have serious back and neck issues, and I'm on the slow downward slide to a really bad condition called "chronic regional pain syndrome," or CRPS.  Thankfully I'm with the one pain management specialist in the world who understands this well enough to fix it immediately. If I was not, I shudder to think how I would be doing. Bringing up a second child a few years in the future would only be harder (my body would be creakier, the people who help me now would be older and would find it more difficult as well), notwithstanding all the unique challenges that single moms face. Yet a part of me strongly does not want Gauri to be an only child. Later on, if that part of me holds sway, I don't want to be stymied by the state of my eggs at that later date, which means I have to do that IVF now.

Right now, I'm taking it one day at a time, because I'm not yet ready to take any action in this area. Pulling the covers over my head has never felt so very good.

Tuesday, July 8, 2014

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. 

Saturday, July 5, 2014

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 5th pregnancy, not her 4th), 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 11th and 12th 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 2nd of April, which would be the 36th 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 5th 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 36th week point were excessive (!!!). Nonetheless, he agreed that she would present herself back at the hospital at her weekly appointment, which coincided with the 37th 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.

Thursday, June 19, 2014

On jinxes and attachment parenting

Every time I praise or discuss my daughter (Oooh her cheeks are getting  nice and chubby, Yikes she drank 38 oz of formula today, etc.), I literally have everybody jump down my throat, because apparently, Indian culture dictates that if you praise your baby or discuss a specific aspect of his/her progress, you will JINX WHATEVER IS POSITIVE. Apparently, praise/focus from us moms is the most deadly thing for a baby. Meh. My response, as you could imagine, was always an eyeroll.

But then, I came here and boasted about how well she was getting over her vaccine, and wham. Day 3 post-vaccination, my mostly Jekyll-esque baby was replaced by Hyde. She was uncharacteristically fractious, and wanted to be comforted/held all day. Two days in a row. The third day (yesterday) she seemed mostly back to normal, but now I am a little more respectful of the jinx than before. The scientific side of me says that it may have been a delayed reaction to the rotavirus vaccine which is a live vaccine, and one of its side effects is irritability...it only surprises me that it was delayed by three bloody whole days. Did any of you experience this (irritability, delayed or otherwise) after the rotavirus vaccine? How long did it last?

The day after Gauri was born, in my bleary haze, I downloaded my first (and only, I think) parenting book: The Baby Book, by Dr. Sears. It basically lay mostly unopened in my phone for a while: I did read the chapter on attachment parenting and went Oh crap, she is in the NICU so I cannot bond with her, she has no knowledge of me since I did not carry her, and I can't breastfeed. Thankfully at that point I was too exhausted to add one more thing to the list of things I worried about, and I was confident that I'd be able to bond with her eventually, BF or not.

And indeed, even though I could not do many of those things, I still get to practice attachment parenting and I love the concept. Overall, I love how sensible that book is, though I have trouble believing that the "cry-it-out" style, if used in moderation, is deleterious. I love the fact that he tells you to parent how people have parented for millenia (including cosleeping, though you have to be uber careful/sensible in how you set things up), with no concept of a strict schedule for feeding or sleeping, no crying it out, and comforting your baby when they ask for it, no matter where he/she is on the "needs" spectrum. All of this seems sensible to me. Yet, I recognize and totally respect the fact parents the world over just do not have the bandwidth to parent like that, given the fact that there are only two (or only one) of them with jobs and limited help from others. Even if there are other people like grandparents, I've seen too many cases where interfamilial friction gets in the way. Fulltime attachment parenting in these circumstances would require herculean effort.

Gauri is low maintenance most of the while and plays by herself a lot, but occasionally requires extra cuddling and holding/attention. She mimics a "high needs" baby in that if you don't give her what she wants, she will open her mouth and make the concrete roof shake. Even her relatively limited requirements would have been difficult to fulfill had I been on my own in the States, exhausted from doing everything myself. In India, there is the concept of the joint family, where parents and grandparents and sometimes great grandparents live under the same roof. To be able to give her to multiple somebodies I trust is priceless. Living in a large family has multiple drawbacks and can lead to a lot of friction, but here is its one shiny, ginormous advantage. If your child is raised by the village, life is awesome  for everybody, most importantly the baby itself, and attachment parenting is possible. The situation now makes the past 1.5 years I spent in India with no life (no dating, an utterly staid social life, limited freedom, lots of nuisances) Totally.Worth.It.

As a side note, I was a little bummed that there was so little response by way of comments to my post on enhancing immune responses: parents, I request you to read and respond as to whether you do or do not do any of those things, and whether your pediatrician recommends any of those things, and if it has made any difference. I'm asking for this because I think an interactive dialogue would be useful.

Sunday, June 15, 2014

Tales of my gourmet barracuda, and post up on the other blog

The American Association of Pediatrics apparently has cutesy nicknames for different types of  nursing/feeding behaviors: After extrapolating this to bottle feeding, my darling appears to be a "barracuda." She is currently wolfing around 38-40 oz a day! The "gourmet" title is earned because she still turns up her nose at the milk if it gets too cold. But yeah, mostly "barracuda." I'm so proud. And also afraid, because if we delay bringing that bottle to her by even 3 minutes, she opens her mouth to unleash the hounds of hell on us, and sobs so robustly that her breath catches. Then, when we frantically shove that nipple in her mouth...immediate, blessed silence. It is like flipping a magical mute switch.

Overall, two months in, she is doing wonderfully. No spit up, no colic, great growth, focusing and interacting beautifully, utterly sweet smiles of which I am increasingly a recipient, pooping like a breast-fed baby, and sleeping 7-8 hours a night! I kid you not on the last one. For a  painful 4-5 days, she had decided that between 1 am and 6 am was the time to stay up, demand cuddling, poop a couple of times, and drink about 12 ounces of milk spread out over 3 bottles. Sleep deprivation was me...there were nights I was afraid I would literally fall asleep on her. I figured she had day-night confusion, and decided to try to expose her to really bright sunlight during the day and do whatever we could in our very limited capacity to keep her from sleeping too much....it may have worked, or she may have simply "drifted" into a new pattern, because her "cluster feeding" shifted to the period between 9 pm-12 am, and when she goes to sleep after tanking up on about 12-13 ounces of my goat milk formula, she sleeps around 7-8 hours. This pattern has been in play for about ten days now, and I would totally commit murder to keep it from going away. It is really interesting that after consuming 10 oz of formula, she actually gets super excited and frantic while consuming that last bottle: the "tanking up" instinct definitely seems neurological. This cluster feeding occurs only once during the day; the rest of the time, she takes 5 ounces every 3-4 hours.

She also had the first of the "scary" vaccinations, getting the rotavirus drops and the DTP shot on the same day. Unfortunately, when we went in the acellular verison of the DTP vaccine (which is less efficacious but has fewer side effects) was out of stock and we had to get the whole cell version, which causes a more severe reaction, generally. Her response to that was a very mild fever and induration/redness at the site of injection and general crankiness, but thankfully, her appetite never suffered and she was as alert as ever after, so I heaved a giant sigh of relief, and she was entirely back to normal within 36 hours.  In about 30-45 days, we will go in for the Hib and the pneumococcus shots, or I may split those up. As I had first stated, I wanted to delay these shots till she was a little older (till about 3-4 months), but the guilt/pressure (external as well as internal), even when you want to delay vaccinations just a little is immense. Each vaccine decision is a war: I refused to get her the BCG shot at birth, and gave it only after she crossed the one month mark. Ditto the polio drops. In India, the oral polio vaccine is given at birth, and in very, very rare instances, can cause polio in itself. I hence refused the drops and got her the shot instead at 6 weeks. I had to have arguments with so many people, and also myself just to get these small but significant delays; blargh.

Finally, I have the a blogpost up on the the other blog. I had mentioned that there are some easy ways to ensure that your infant/child's immune system is at its fighting best, and I've addressed that in this first blogpost.

Thursday, May 29, 2014


  • I have finally started that other blog with my real name....bookmark it/follow it if you like the subject matter. I would also request you to share it (on Facebook and stuff) if you feel so inclined.  It is at http://decodingscience.wordpress.com The introductory post gives a pretty good overview of what the blog will be about. I eventually will move a lot of the science stuff from this blog there, once it gets a bit more search engine optimized. Next up will be a blogpost on  the benefits of a specific probiotic supplement in infants: I got really excited about it when I first found out about it, and I've been meaning to write this post forever, but I do not call myself the queen of all procrastinators for nothing. I will write it within the next week, I promise.
  • I have also started detailing the first few weeks/months for Gauri to come find as she gets older, and have made it a sticky page. I'm still trying to decide the privacy level of this one.
  • I have also updated the goat milk formula recipe post with a how-to on making the formula and some other tweaks/notes. Something interesting to share: I started adding 1/8th tsp homemade clarified butter (ghee) to 8 oz of formula to supply additional fats, and to my very pleasant surprise, it increased the frequency of her bowel movements from 1 per day to 2 per day (further investigation revealed that ghee IS used to treat constipation in adults). I know formula-fed babies have some serious issues with constipation, and I saw some of that when I was on Nestle Nan, but they have all gone away using this formula, and her pooping patterns now resemble that of a breast milk-fed baby. I feel pretty good about that.   
Will be updating this post and the sticky page with pictures soon. 

Thursday, May 15, 2014

One month old!

It is going to be a little difficult composing blogposts now, because instead of one or two centralized topics to talk about, I have many little things to say, and I'm still struggling to find a format to fit that.

First up, I'm going to continue to talk about science, but in a new blog, using my real name. YAY! it is time to step out of the closet, so to speak. So exciting! The past 4 years, this blog was anonymous only because this journey was secret. Now that it is out in the open, I'm fighting the temptation to share this blog with people I know IRL. The only reason I'm holding back is because many of the posts on this blog are about personal struggles I would not want everybody reading.

But a blog only about science...that I would be happy sharing. First up on the new blog will be a post on probiotics and the ones out there that are a bit more useful. Next, I'm planning a writeup summarizing all the newest research on autism (there are some new rather exciting discoveries). Both these posts will require extensive research, and I need to get off my procrastinating ass to do that.

But.....coming to the nitty gritty of parenting:
  • Gauri is an utter JOY to feed. In the breaks between sucking sessions, she looks so utterly pleased with life and makes lip-smacking noises and turns her head frantically to find that nipple. It makes you feel 10 feet tall.  I wish I had given my mom this very simple pleasure...I was a horrible, disinterested eater, to the point of it almost seeming like a neurological issue (in my defense, I was supposed to have been an excellent baby in all other ways though). But still, people still shudder when they describe their experiences in trying to feed me.
  • She, on the other hand, is running through like 26 ounces in like 15 hours, which makes me wonder if there is an upper safe limit, and whether she is the one that gets to decide it. Anyway, she produces a lot of wet diapers a day and is gaining a little over an ounce a day, so I'm thinking I should leave this alone...right?
  • Thumbs up for the goat milk formula: other than the fact that she loves the taste even when it has fish oil in it (our little highness does a taste test before graciously accepting it), the other great thing is convenience. I use an electric kettle to boil the water (best invention ever...why do formula websites still talk about boiling water on the stovetop?) and make up 28 oz at one go using a 16-oz pyrex measuring jar, which I split into multiple bottles (LOVE my Pura Kiki bottles; planning to write reviews about baby paraphernalia soon). I also love that I know exactly what is going in my baby's food, and can control it. Her constipation is less once we started the goat's milk; she also had really bad diaper rash in the first few days of life, and it is entirely gone now. I don't know what has fixed it (the diaper rash cream I use, the different brand of diapers, or the change in food). It is possible that the cow's milk contributed to the rash, and it was fixed by a change to goat's milk, but it is hard to say.She is a bit gassy once we started the goat'ls milk, and this could be because of the milk protein OR the lactose. Need to figure out what to do here. I can try changing the carbohydrate source.
  • I've been trying to cloth diaper, but this kid really hates the feel of wet cloth (even the thick microfiber inserts) against her, and wakes up from sleep. The problem is she seems to pee every 30 minutes, and changing her while she is sleeping wakes her up. Are there CD inserts where the top stays dry like a disposable diaper? Right now, I'm using the Naty brand of disposable diapers, and they ROCK. It would take a really good CD to be as comfortable (for her) and user-friendly for me as this one.  
  • Thank you Shannon, for your recommendation of The Piano Guys. She loves their songs (as do I!).
  • This kid will be giving me grey hair very soon: As soon as she came home from the hospital,she was already using her feet to push off against people's torso's and thighs, depending on how we were positioning her. All these acrobatics are a little scary considering the fact that she can't support her neck. She is already trying hard to turn over too. at this rate, she is likely to be mobile a little ahead of schedule. I live in a house with really hard marble stairs, and it will be a year before the bones in her skull fuse....YIKES. If anybody has babyproofing ideas for the stairs (other than the gates), please let me know. Just FYI, Carpet in India would  be a really awful idea in the monsoons, where it rains so hard that the waterproofed concrete house starts to leak.
  • Going to leave you all with a picture of the munchkin that has many many people wrapped around her little finger.

Saturday, May 3, 2014

Parenting: the first days

I was tempted to title this post "Snot Factory," because that about sums up my general state for the past two weeks. I can't remember the last time I had the common cold, but I've had a relentless two weeks of symptoms now, and I'm beyond sick of it. At the height of things, where I was coughing every 10 mins, I stayed away from Gauri entirely. Since then, my symptoms have improved, but have not gone away fully.

Then my mom got sick, and we have two people (three including my father) coughing all over the place. A few days ago, it looked like Gauri had finally gotten this nasty infection, but thankfully, today, she seems to be mostly symptom-free, and her feeding (frantically knock on wood) has remained okay throughout.

I have a TON of help (an amazing (albeit slightly bossy) live-in nanny, a cousin who came and stayed a couple of days when everybody was sick, my parents, and my brother). The entire family is hands-on about taking care of her, which has literally saved my life. This is the amazing part of being here, and it is so lovely to see how much my family dotes on her. With my infection, I have not been able to fully bond the way I've wanted to with her, and sometimes, I literally elbowed out of the way by grandma and the grandpa and the uncle and even the nanny. Sigh....everybody wants their time with this little girl.

I went public on Facebook few days after the birth, and the response has been gratifyingly and very surprisingly overwhelmingly positive. It is quite amazing, but many really conservative family members have given me and my parents no grief and only offer congratulations and some even talk about how brave and intrepid I am, which just makes me blink in astonishment: I really did not see this coming, but I am so grateful (for my parents sake) that this response has been so positive.

As a technical note, I started the goat milk formula after ten days of being on Nestle Nan Pro 1 (which has soybean oil, yuck, I detest unfermented soy-based products). She tolerated the change very well, and her poop has become softer and the mild constipation she had on Nestle Nan has gone away.
From the formula I listed here, I increased the goat milk powder (to 1 tbsp per 8 oz), slightly decreased the lactose, halved the coconut oil, and threw out the blackstrap molasses as it appeared to be giving her too much iron (green poop the second day).  The only downside we could see with this formula is that she seems to get hungry a little more often, but her weight gain has been good (8.5 ounces/week). 

Monday, April 28, 2014

Understanding my infertility: four years in retrospect

When I had my first miscarriage and then my second in rapid succession, I had no idea what was going on, and I made truly valiant efforts to understand. I went off on a lot of tangents, and some of them (the Vitamin D deficiency, understanding the connection between Vitamin D and AMH, the thyroid autoantibody issue) yielded a lot of valuable information. There were some indicators that all of these (the vitamin D deficiency combined with the TPO antibodies, often seen in women with PCOS) may be indicative of a very low level of autoimmunity that may have interfered maybe oh-so-slightly with the progress of a pregnancy, but at the end of the day, I think these things were not my central problem.

There are two aspects to egg quality, both of which decline with maternal age. One is the state of the egg cytoplasm, which has all the mitochondria and the nutrients required to survive, divide, and thrive for the first 8 days of life by itself. The second is the chromosomes itself, and this is governed by the meiotic division process where your 46 chromosomes are divided into two sets of 23 chromosomes each. I talk about how one or both of these may be affected in the "Science of Infertility" section.

What was my problem? My cytoplasm quality was, by all accounts, really gosh darned good. It may be that I have an issue with the meiotic chromosomal division process, as a result of which a high number of my eggs are aneuploid, and I may have come into this problem (which is usually seen in women in their 40s) ten years or so too early. Compounding the problem may have been my "superfertility," which may have caused my rather stupid uterus to implant embryos that a "normal" person's uterus may have rejected. I have come to these conclusions based on the following statistics:

  • My pregnancy rate was 75% (3 out of 4 unmedicated cycles), which is FAR higher than the figure (20%) reported in "normal" women. Two of my three embryos were shown to be aneuploid, and one of these aneuplodies was a Trisomy 4, which is extremely rare because embryos with a trisomy of this ginormous chromosome almost always fail to make it to the blastocyst stage, or after, fail to implant or grow. 
  • Normally, the implantation rate for high-grade blastocysts is around 40-50% (i.e., 1 out of 2 blasts is likely to implant). The implantation rate for my high-grade blasts in women with "normal" fertility (the two surrogates) was far lower (1 out of 5 blasts, from 3 transfers).  
This suggests that most of my embryos were abnormal, and I kept implanting them anyway. This pregnancy may have come about because J's uterus could perform the selection that mine could not.

Had I not the "superfertility" issue, I may have just taken much longer to get pregnant, but may have stayed pregnant when I finally got knocked up. That would have been so much better, but as I gaze at my baby girl, I'm still fine with this version of events.

Now WHY I had the meiotic division problem is really the gzillion dollar question, that remains completely unknown. There appear to be no biomarkers or tests to indicate this. One has to wonder if the common problems seen in infertile women (The MTHFR mutation, the PAI variant, various autoantibodies) are biomarkers (indicators) for this issue, or are linked to it in some way, but nobody has ever looked at these particular questions, I think.

The other thing I wonder if there is a "cross talk" between my embryos and uterus that was messed up, and a developmental "brake" that malfunctioned in my embryos. Each time I ever got pregnant, it was an ovulation from my left ovary. The one time I failed to get pregnant was a right ovary ovulation, and honestly, I fail to see how that embryo could have been more messed up than the left ovary-derived Trisomy 4 embryo that implanted in my next attempt.

Interestingly, during IVF, I asked the embryologist to culture the eggs from my right and left ovaries separately, and the results were interesting. Normally, around 40% of fertilized eggs become blasts, and I saw this in my right ovary eggs. In contrast, over 70% of the fertilized eggs from my left ovary became blasts, which is far higher than normal. My daughter (feels SO amazing to say that), came from a right ovary egg. All this makes me wonder if the fault (for the messed up crosstalk between the uterus and the embryos) is a problem that is a problem specifically in the eggs of my left ovary. Of course, this last bit is wild speculation (even more so than the first bits, which are a lot more likely). 

There...the last 3 paragraphs will probably give everybody a headache, but I had to put down my thoughts for posterity. There is a part of me that wants to go back and do research on this issue, because I feel so passionately about it. I've actually been thinking about whether there are openings at RMA-NJ (because they are such a research-oriented fertility group).

Anyway...all is well that ends well, and I hope this recounting will be of use to somebody someday.

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