Saturday, December 20, 2014

Keeping up with baby: a how-to post

Gauri turned 8 months old a few days ago, and boy, is she keeping us busy.  Had I been  taking care of her alone by myself in the US, even with a nanny/au-pair for help, both the nanny and I would have needed a nice padded cell within a few days, I think.

Oh, I exaggerate. But seriously, this child has energy. If adults could channel even a fraction of baby energy, we could move mountains. This little monkey needs to be on the move constantly. Crawling, standing up and just expecting the person behind her to catch her as she eventually loses balance, opening cupboards,  investigating things, mouthing everything in sight, climbing (she fearlessly would climb up an entire floor, while whoever was trailing behind would live in fear that she would slip and we would fail to catch her), investigating everything, and just moving. All day long. She actually fell behind on the weight curve despite drinking copious amounts of formula and being on solids, just because every calorie was directed towards movement.

In all this, I have had to be super creative just to find things for her to do that will keep her sitting relatively still for short periods of time---a dire need as the relatively baby-safe areas in my house are limited as hell, and her caretakers are tired.

Coming up with a list here as to what has worked for me (other than toys like activity tables, which has been a big hit):

Books: Around the start of her 7th month, she actually started paying attention to me reading to her, and it is a fantastic way to get her to stay still. I've done a ton of research on baby books now (the Facebook group comes in very handy), and I'm putting up a list of what works, and what failed:

What works:
  • The Usborne series of Touch-and-feel books (I've tried and can vouch for "That's not my Panda/Monkey/Dinosaur." Thumbs down for "That's not my Tiger/Lion"----not their best efforts).
  • Margaret Wise Brown's Goodnight Moon (I am really surprised how much she loves this one--cannot figure out the mysterious alchemy that makes it work)
  • Sandra Boyton's Moo Ba La La La (Huge hit, and here I can see the appeal)
  • Eric Carle's The Very Hungry Caterpillar (What makes this book work is the holes in it..she loses interest the minute the pages with the holes punched in are done)
  • Bill Martin Jr.'s Brown Bear, Brown Bear, What Do You See? (Huge hit)
  • Nina Laden's Peek-a-Who (expresses moderate interest in this---I think the mirror in the end saves it)
  • Herve Tullet's The Game Of Finger Worms (You have to draw faces on your fingers and stick them in the holes---kind of fun for everybody involved)
  • Karen Katz's Where Is Baby's Belly Button? (Huge hit, and I love how well executed this lift-a-flap book is) 
  • Bernadette Rossetti Shustak's I Love You Through and Through (expresses moderate interest in this, but I do like the illustrations, they are really nicely done).
Failed to/has not yet worked:
  • FAIL: Sandra Boyton's That's not my Hippopotamus (she would just wander off after looking at the first page)
  • FAIL: Bill Martin Jr.'s Chicka Chicka Boom Boom: at 9 months, she shows no interest in this one.
  • FAIL: Dr. Seuss's One Fish, Two Fish, Three, Four, Five Fish (Dr. Seuss Nursery Collection)--Boring! Not impressed at all. 
  • Too young for: Mr Tiger Goes Wild (This is a Boston Globe-Horn Book Award winner, and is awesome. Highly recommend)
  • Too young for: Where the Wild things are (Caldecott medal winner, I loved this---waiting for her to get old enough to get it).
Fridge Magnets! This was discovered quite by chance, that this child is endlessly fascinated by the few paltry fridge magnets we possessed. Since our kitchen is distinctly NOT child-friendly, I will be investing in a magnetic board and a few magnetic toy sets (so much fun looking on Amazon---if anybody wants recommendations and does not feel up to research, let me know).

Photos: Also discovered quite by chance that this child loves pictures of us, and particularly pictures of other babies. I'm having collages made of family pictures, and will also come up with photo books, and the thing I am the most excited about is a giant collage I am having made of all her half-siblings (14 in all) and herself, and tell her who they are.    

Busy Boards: Considering something like this, as this baby loves hinges and door knobs and things that slide.

All in all, it is amazing how excited *I* get over these little things. If anybody has more ideas, please share!

Friday, November 14, 2014

Turbulent joy

I had a visitor a few days ago. This person's visit resurrected a few memories: she was my house guest at the time I had my first IUI (in total secret). I had to drop her off at 7 am on a Saturday to a conference an hour away, and drive back pell-mell to be on time for my IUI appointment. I vividly remembered all the impatience and the excitement of that time. She left midway through the agonizing two-week wait, and I remember my huge relief  that I could then savor the anticipation out in the open. I remembered the surreal and utterly joyous moment I got that positive test, and the utter anticipation in the 2.5 months that followed, and finally, the crushing realization that it was all going to come to nothing.

Four years later, as I watched this visitor play with Gauri, my thought process shifted. It was not for nothing. Each painful step of the way was a step in the journey that was bringing me to this baby, each step helped lay the foundation to help me figure out what I had to do to make her come into being. That line of thought dispatched that sad sense of futility. Nonetheless, even in my wildest happy dreams, I could not have envisioned the miracle that is this child.

I had always wondered if the souls of the babies I have lost would return to me one day. Here is a line of thinking that will never culminate in any answers, and I guess its value is in whatever comfort we can draw from it. It was probably my second loss and my second baby that lingered with me the most strongly: I had a nickname  for her: Turbulence, because boy, did she make her presence felt.

Gauri has that same quality. She LOVES people. Loves, loves loves them. Loves talking to them, smiling at them, playing with them, and oh, that curiosity about the world. It is the most beautiful thing to see. She started crawling rather early (6 months) and has such ambition and energy. She immediately wanted to pull up to stand, even before she could sit steadily, and figured out how two weeks later. She now yanks herself up using furniture, determinedly tries to open cupboards (the ones by her play area stick, thank god), crawls all over the place, and shows a decided interest in climbing stairs, and nibbling at my slippers, and attacking my cell phone, and oh, the object of maximum fascination, my laptop. Sigh. She has to be shadowed constantly, with a hand at the ready to catch her. I've forbidden people from grabbing her hands and encouraging her to walk towards them, because I want her to crawl as long as possible. 

We went with something called baby-led weaning (without meaning to), which skips purees totally. This kid can eats mashed-up food versions of grown-up food. She gnaws on whole pieces of fruit and eats chapattis confidently. At seven months, she now wants to self-feed. She has never gagged, to my astonishment. She lunges towards food, attacking our plate if we eat in front of her, and if she sees us eating or drinking, her mouth moves in anticipation.  The most cruel thing to do is deny her grown-up food and give her a boring bottle of formula instead. I am really, really looking forward to almost every culinary restriction being lifted when she turns one.    

In short, this child is such a force of nature. I look at her and marvel at her, and my mom tells me that all babies are like this...that curiosity, that joy. They probably are, but I've never spent real time with any other baby before, so it would be hard for me to fathom. My brothers and cousins better get cracking reproducing, so all of us get to experience this joy again. I could have never imagined that anything will light up a household like this.

I post so rarely, and I have work stuff and immigration stuff and life decision stuff to talk about too, but sigh, who wants to go there when you could be talking about babies throwing food on the floor? Nonetheless, I will say that freelance scientific editing is a good fit at this point in my life. I am slowly starting to accept more work, and I'm on the prowl for companies that will pay the most. While it is rather tempting to not work at all, I do have nest eggs to build up, in preparation for their rapid depletion for when I return to the US. Sigh. 

Friday, October 17, 2014

Rushing in where angels fear to tread (my two cents on sleep training)


I am a member of a secret Facebook mommy group (the sort where you only join when a member adds you) that most consists of working Indian mothers living abroad, and a few in India as well, and some non-Indian moms as well. I cannot put my finger on why this particular group is so useful, but I think it is just the sheer density of very smart, very resourceful women on there: I've learnt many things on there, and I'm usually the one dispensing information like candy, whether people want it or not.

So, in this very,very useful and mostly positive group, I was taken aback to see a spate of articles making sleep training (specifically, CIO) sound like child abuse (there was one rather ridiculous one about a letter written by a baby undergoing sleep training, not going to share the link). Since there seemed to be almost a 50-50 split between moms who sleep-train and moms who stay far away from it, the battles were fierce, with both sides making preposterous claims about the results of both parenting styles.

Having spent a few of my initial sleepless nights aimlessly browsing what the "experts" say out of sheer curiosity (what I did in the end was totally based on instinct), I was familiar with the arguments made by both sides, and I decided to offer my own commentary on what they said, to try to offer some rational perspective that took a hard look at the arguments offered by both sides

My commentary was pretty well received and nobody came after me with pitchforks, and I figured since I spent so much time on it, it should be out here as well:
  • First, there is no such thing as a baby expert or a sleep training expert, IMO. People claim to be, but they are really just people who make stuff up as they go along, and want to produce enough talking points to fill a book. Anybody who claims they are “baby experts” are charlatans IMO. Trying to say that sleep training produces “better behaved, better-adjusted” children is part of the charlatan-speak. Finally, sleep is developmental, not behavioral: this basically means your baby’s brain needs to develop and mature till the point arrives that he/she can sleep 6+ hour stretches.
  • Why did sleep training come about? When did parenting go from an instinctive, intuitive thing that never involved ignoring your baby’s cues to a training and schedule-driven process? It did not come about as a “eureka” process to improve baby behavior. It came about to compensate for the fact that people no longer parent in an extended family. And that, the stopping of parenting in an extended family, IMO, is the true tragedy. There is now a very real need to reduce the burden of parenting, because parenting went from something the entire extended family did to something two individuals or even one individual had to deal with alone. So yes, some people need to sleep train just to keep going. 
  • The “experts” on the other side who talk about sleep training resulting in disassociated, disconnected individuals more often use parents who ignore their baby’s cues constantly as examples. I've seen articles talking about how sleep training produces disconnected children reference orphanages in Romania, which is just ridiculous. People who sleep train may practice dissociative parenting (where you do not respond to your baby’s cues) only at bedtime. The rest of the time, most sleep-training parents here WILL respond to their child’s cues, and the children do come to trust their parents and bond with them through this associative parenting
  • On the flip side, let us also talk about that new study which showed that babies were stressed (high levels of cortisol) even when they were no longer crying and had seemingly adjusted well to the sleep training. This is a black and white, no-frills point that shows very clearly that what is going on the surface is no indicator of what is happening inside. I read that study, and I wanted to know how long that cortisol elevation lasted. Was it still there a month into sleep training? Six months? Cortisol can mess with neuronal growth, so this finding is not good. However, what is the true impact of this? I refuse to believe that sleep training alone can produce mal-adjusted individuals. Can seemingly well-adjusted, successful, happy individuals be mildly affected by periods of stress during their babyhood? It is possible. Can you measure how much they have been affected? No. How much more healthier would they have been if they had not been sleep trained? Would they be more trusting or have had better relationships with their parents had they not been sleep trained? No one can tell. It is not possible to measure or extrapolate. It is possible sleep training has some mild to moderate psychological effect, depending on too many factors to enumerate, including the parenting style used the rest of the time, but it is impossible to figure out. However, I find it difficult that this prolonged elevation of cortisol at sleeptime could be too deleterious. It is also important to consider the effect of a perennially stressed parent, and the effect they could have on the child if they are stretched too thin. All of life is a balance, after all  
  • Finally, to bust some myths about what may happen if you do not sleep train: one can get a baby who sleeps through the night early without sleep training. Cosleeping and responding to your babies cues does not automatically spell misery for the parent who chooses it, or result in a maladjusted, cranky, child who cannot sleep at all. I cosleep with Gauri and respond to all her cues. She usually sleeps through the night (at 5-6 months of age). She does not spend all night kicking me (saw this a lot  in the case against cosleeping). She chooses her own schedule (no matter what I tried, she goes to sleep around 11:30 and wakes up at around 10 now, with an awakening at around 7:30 am for a feed). Rocking her to sleep is a waste of my time. After a bath+massage, I tuck myself in bed with her and just wait for the point that her own brain signals that it is time to sleep (usually 11:30 pm). We actually have some fun interacting in this time, where she crawls around, babbles at me, wails occasionally, wants to play, etc. It is not purgatory for me, and I do not begrudge her the time I have to spend doing it. Importantly, I know that the method I use to get her to sleep will keep evolving as she grows older, because she is also evolving. Finally, despite the lack of sleep training, and lack of scheduling of naps, she is not cranky during the day and naps adequately, if not at the same time every day. 
  • What I am trying to say is you can raise a happy well-adjusted child no matter what you practice. Which method you choose depends on multiple factors. Sleep training may not be suitable for high-needs babies, babies who get very upset when their needs are ignored (the ones who cry for a long time/ throw up, etc), or very young babies (sleep training a two-month old is not advised), because the risk that it can be detrimental is much higher in all these cases. IMO, it should not be chosen to improve behavior or because of the mistaken belief that it results in better-adjusted children, but it can be used safely in many cases when parental exhaustion is a problem, and many children may be fine with it.
I hope this is actually useful to somebody, and does not put anybody's back up. I cosleep and attachment parent, and the results are amazing for me, but I am also lucky in that I have a child whose brain maturation vis a vis sleep has been seemingly rapid. Even if this was not so, I am also lucky in that I would have had help if she continued to keep waking up at night.  Nonetheless, a very important take-home point I want to drive home is that every child will differ in when they acquire the ability to sleep through the night and self soothe, and that cannot be rushed, whether you wait it out or cry it out

Peace. 

Thursday, October 9, 2014

The goat milk formula recipe

As many of you know,  Gauri was born via surrogacy and hence did not have access to breast milk (see my post on why I decided against induced lactation).

Much before her birth, I started researching my formula choices, and was soon struck dumb at the awful, awful choices the infant formula industry has made (see here  and here as to why). So after much research, I decided to go with a homemade goat milk formula, to avoid the unnecessary additives, get a healthy source of sugar (lactose) and fats (extra virgin coconut oil), and go with the animal milk source that is kindest to the gut and is the most easily digested (this turns out to be goat milk). See herehere, and here  to understand the advantages goat milk presents over cow milk.

This post is to clarify the formula I have used, and explain the reasoning behind its formulation.

I should add, immediately after birth, my baby was put on a cow milk formula, as per hospital rules. She  did fairly well on this formula, but was splotchy (red splotches on her face and body, and interestingly, her upper lip would be very bright red when she was drinking), was mildly constipated, and had a diaper rash. All three issues disappeared after she was switched to this formula, suggesting that she was mildly intolerant towards cow milk protein, and her growth has been nothing short of phenomenal.  

  GOAT MILK FORMULA  
per 8 oz
per 32 oz
Goat milk powder (scoops) (Myenberg whole goat milk powder)
1
4
Organic Lactose (teaspoons; tsp) (NOW foods)
2.232
9
Organic Unrefined Safflower oil (tsp) (Eden Organics)
0.5
2
Organic Extra Virgin Coconut oil (tsp)  (Artisana)
0.5
2
Organic Unsulphered Blackstrap molasses (Tsp) (different amounts are for 0-3 mo, 3-6 mo,  6-9 mo, and 9-12 mo). 
0/0.125/0.25/0.5


0/0.5/1/2

Additives (amount given per day, added to 32 oz formula for convenience; exception, probiotic)
Probiotic Lactobacillus reuteri (BioGaia Protectis or Gerber Soothe Colic Drops)
 5 drops --- add directly before feeding.
Baby's DHA (Nordic Naturals)
see package insert 
Vitamin D (Carlson's or Super D drops)
1 drop (400 IU) 
Acerola Cherry Extract to supply vitamin C (Madre Labs)
0-125-0.250 tsp

Vitamin B-12 (methycobalamin; Douglas Labs)
2 drops (2 mcg)

  • This formula base is very similar to the one provided by Joe Stout at Mt. Capra (major, major credit for coming up with it), but differs with the supplements used (the BioGaia probiotic, which is nothing short of miraculous in many cases, and has been extensively studied and tested in infants and children, and boosts immunity), and DHA, which is supplied by breast milk. I use a natural fish cold liver oil source that has been tested for PCBs and heavy metals, and since less is usually more, I use half the amount the company (Nordic Naturals) recommends. This addition is not required if you are doing a combination of breast feeding and formula feeding.
  • Another important difference is that I have not used the multivitamin in the Mt. Capra formula, because I dislike the formulation due to the use of preservatives such as sodium benzoate in a formulation containing vitamin C (together, they form benzene, which is carcinogenic), and generally prefer natural food-derived vitamins to their synthetically produced counterparts.
  • Lactose intolerance is extremely rare during infancy, and often, intolerance to cow milk protein is confused as lactose intolerance, resulting in the turning to other less healthy sugar sources in formula such as maltodextrin or rice syrup or corn solids. While the Mt. Capra formula suggests many alternatives (including lactose) for the sugar, I cannot endorse the the use of brown rice syrup (which raises arsenic contamination concerns) or turbinado sugar, and strongly recommend that only lactose be used, given its many health-promoting effects (improves iron absorption, helps in the setup of a healthy gut flora, which is truly crucial).
  • Goat milk is significantly low in folic acid and Vitamin B-12. Myenberg Goat milk is already folate fortified. I have added Vitamin B-12 back in the formula, as methylcobalamin, for cyanocobalamin. Note that while the Vitamin B-12 RDA is 0.5 mcg/day, I am adding back 2 mcg/day, as I discovered that sticking with the RDA left my baby with low levels (this is why I strongly emphasize a blood test).
  • The formula takes into account that other B vitamins, nucleotides, etc. are supplied via goat milk. While the stability of nucleotides following heat processing is unknown, B-vitamins are unlikely to be very affected by pasteurization (exceptions, Vitamin B-2; source http://www.ncbi.nlm.nih.gov/pubmed/22054181). B Vitamins are also supplied via blackstrap molasses.
  • Vitamin D is partially supplied via the goat milk (it is vitamin D-fortified), but if your baby does not get sun on a daily basis, this may be insufficient. The amount of vitamin D required to avoid deficiency is very unclear as well as controversial, and many sources suggest that 400 IU/day may be insufficient. I hence add an additional 400-800 IU/day, and I plan to test blood levels at the one-year point and adjust accordingly.
  • Vitamin E is low in goat milk, but its requirements are partially fulfilled via the Vitamin D drops (20% of the RDA per drop).
  • Vitamin A requirements are met via goat milk (fairly decent source) as well as the cod liver oil (Nordic Naturals DHA). Hence, supplementing this formula with a multi-vitamin may result in the exceeding of the Vitamin A RDA.
  • Vitamin C is low in goat milk; hence the inclusion of a small amount of Acerola cherry extract. This also facilitates the absorption of the iron supplied via blackstrap molasses. Note that Vitamin C is heat labile (destroyed over 70°C), so make sure to cool the water sufficiently before adding, and make sure not to overheat bottles during warming.
  • Iron requirements: The 3 different concentrations for the blackstrap molasses ingredient are based on diffing iron requirements for different ages. Goat milk is far better at facilitatingiron absorption than cow milk, but is most likely inferior to breast milk (has not been studied).The three different formula recipes for different ages differ only in the amount of blackstrap molasses. Now, blackstrap molasses supplies 3.5 mg iron per tablespoon (15 mL), so the formula is designed to deliver 0.58 mg iron per day between 3-6 months, and 1.166 mg per day between 6-9 months, and 2.33 mg/day from 9 months onwards.  The remainder of iron requirements should be made up via solids or supplements. A fingerprick for hemoglobin testing at 9 months is recommended. If the formula is used between birth and three months, no blackstrap molasses is added.
  • I STRONGLY recommend a blood test for Vitamin D, vitamin B-12, and iron at 9 months - 1 year, and adjusting the levels accordingly, if required. You can ask for this at the routine well baby check that is recommended around the one-year mark.
  • If you wish to supplement with a multivitamin (I do not like multivitamin formulations, see the first bullet point), then the only additives should be DHA and the BioGaia probiotic.
  • After 1 year, full strength goat milk may be given with no additions of lactose and safflower oil, but I recommend continuing with a small amount of the coconut oil (0.5 tsp per day), the probiotic, DHA, and Vitamin D. Other vitamins can be acquired via a healthy and balanced diet. 
  • Please see here for how certain components of this formula (Vitamin D, the BioGaia probiotic, extra virgin coconut oil), along with a few others are useful in strengthening immune defenses.
INGREDIENTS & OTHER ITEMS REQUIRED:

Formula Base

Minerals, Probiotics, Vitamins, and others 
Other requirements
 How to make the formula:
  • Sterilize all bottles, cutlery, whisks, and measuring spoons, and  boil reverse-osmosis filtered water (or whatever water of your choice) using an electric kettle (do this many hours before preparation, so it cools enough).
  • Add the goat milk powder and lactose, and oils and other ingredients (everything other than the probiotic) to the pyrex jar. Add 100 mL of warm to hot water and mix  with a spoon till the powder is assimilated. Use the milk frother to break up clumps and mix evenly, then add water, and keep using  the frother. Make it up to 32 oz and distribute into bottles that are stored at 4°C.
  • Bottles stored in the fridge should be used within 48 hours.  
Disclaimer: Breast milk is truly the best nutrition for the baby for as long as possible. If you wish to use this formula, I recommend that you do so only after a consultation with your pediatrician. Note that infants allergic to cow milk may also be allergic to goat milk, though many tolerate it well. Anphylaxis in response to milk proteins is extremely rare, but can occur.

Sunday, October 5, 2014

Six months!

There are some time periods during a baby’s development that have been termed wonder weeks, because that is when giant leaps in development occur. It seems like Gauri’s fifth month has been one continuous wonder week, all in all.

Around the start of this month, her previously erratic sleep patterns started gaining some regularity: she usually falls asleep at 11:30 pm (no, it is not possible to put her to bed earlier: she wakes up every 3 hours if we try this at 9 pm) and wakes up at 7:30 am. I went, YAY.  Before, if she would wake up by herself at say, 4:30 am she would usually need to feed to settle back to sleep….now she wakes up and often puts herself back to sleep, if she does not wake up all the way. YAYYYY! 

This kid (and interestingly, some of her half siblings too) hate being carried on laps, but still she would normally go to sleep after drinking a bottle on my lap. So my jaw dropped the first time she rolled herself off my lap and went to sleep by herself on the bed! She has been doing that intermittently since….serious leaps in independence!   

This child is also super social. She loves people, and cannot get enough of them. She smiles. She squeals. She converses. She is also sensitive. One day, my grandpa’s physiotherapist was home and started talking to her. This girl smiled and babbled. Then the physiotherapist said bye and went away to work with my granddad, and her face fell, the chin started quivering, and she burst into tears. Two days ago, my mother was mock scolding her…this baby got that the inflection of her voice was “scoldy” and that chin quiver began and she was wailing a minute later. The sensitive aspect to her personality (especially during social interactions) makes me a little worried, because there are so many ways that a young child can be hurt.  As her mother, I want to protect her from it all, but that is simply impossible. I guess life is all about building armor, and I just have to make sure she gets the right tools. To that end, being in India drives me nuts in so many ways, but it is wonderful for her. The entire family as well as the extended family dotes on her, and a child like this thrives on affection, and needs a ton of human interaction to keep her from being bored.

She has also had her first vacation, complete with adventures such as the warming up of bottles in moving cars: Thank you Pura Kiki, for coming up with a wonderfully designed, easily warmable bottle--- all you need is refrigerated mixed up formula, an icebox, some really hot water and a cup, and you can be on the road for 6 hours. So, thus armed, we really pushed this poor child’s boundaries. We woke up and hit the road at the crack of dawn, and then we stayed out a good part of the day, and she was surrounded by people who just wanted to talk to her all day, and of course she talked and played and had naps interrupted every time the car stopped and we got out. We did this two days, and on the second day, she was cheerful and happy all day, and at night came Armageddon. She got a rest yesterday and today we are back home now after 4 hours on the road, but it may take a while for her system to forgive us.

She is also in a major hurry to get past babyhood, it seems. She is standing with assistance and manages to wriggle/roll/drag herself all over the bed, but cannot crawl yet or sit up without assistance for long periods, which makes her really mad. Once she crawls and can sit up, my job becomes easier and harder. Currently her lack of total mobility is a source of great frustration for her, and the only way I can alleviate said frustration is by singing to her. I’m so totally her trained monkey. She is very selective about which songs she likes, and gets mad at me if I change the lyrics, so I have faithfully sung the Do Re Mi song only about 15 times a day every day for the past 2 months.  Joy.

In the past week, there has been a massive leap in her verbal skills. She is now “talking” in that she is saying the same sounds, one of which that sounds like a recognizable word  around 10 times a day…interestingly that one is “amma,” which is the tamil word for mom.

Never a dull moment with this child!

Friday, August 29, 2014

Theranos (fertility testing for 35$?!)

I will always remember the day when my third missed miscarriage was discovered. My awesome friend M had come down from Philadelphia to NYC just to hold my hand through it. Soon after I started talking to her, I started crying while in the waiting room. I do not know if it was the memory of past trauma or intuition, but I was literally a blubbering mess while waiting for them to get me into ultrasound. When the loss was discovered, nothing really changed, because it felt like a part of me already knew I had lost that pregnancy even before I got confirmation. I was then completely numb.

That was probably a good thing, because after that was done, they hustled me into a chair to get blood for the recurrent pregnancy loss panel. Usually, phlebotomists can stick me on the first try. On that day, it took them many tries, and each try was one that would have caused me no amount of distress on a regular day. It was the worst blood draw of my life, and I was luckily (or unluckily) too tuned out to care. They took 21 vials of blood, all which were sent off to different laboratories.

Why am I recounting all this? Because blood draws can be painful. They take too much blood, mostly because all tests are not run by the same center. The response time is slow. There can be laboratory-to-laboratory variation. The amount charged is insane.

Had that RPL panel not been covered by insurance, it would have cost me thousands of dollars.

The key to changing the face of medicine is faster and more affordable diagnostic tests. People talk about this constantly, but nobody does anything about it.

A few weeks ago, somebody "liked" a post by A Mighty Girl. I aimlessly clicked on it, and was soon electrified.

Elizabeth Holmes dropped out of Stanford to start a blood diagnostics company that would literally change the face of how things were done.

Asked why she wanted to start this company when she had not even finished college, she replied:

"Because systems like this could completely revolutionize how effective health care is delivered. And this is what I want to do. I don’t want to make an incremental change in some technology in my life. I want to create a whole new technology, and one that is aimed at helping humanity at all levels regardless of geography or ethnicity or age or gender."

Theranos has grown in leaps and bounds in the past 10 years. 

If this very gritty woman keeps forging on, she could very well accomplish what she set out to accomplish. 

How does this system work? Basically, many blood tests can be performed off just a few drops of blood, taken via a fingerprick.

The analysis involves microfluidics, and this company is paranoid about guarding their technology, so nobody knows how it works. Nonetheless, it delivers results rapidly, and their integrated approach allows them to keep adding tests that can be run off their platform, and it is cheap.

The normal fertility panel costs maybe around 2000$. If you use Theranos, you could test FSH for $12.77, LH for $12.73, TSH for $11.55, Progesterone for $14.34, and so on. See here for a list of the Theranos tests. In an intereview in Wired magazine, she stated that her fertility panel would cost $35(!!!!!!!!!).

Where is this available? Theranos has partnered with Walgreens, apparently, and they have planned a nationwide rollout. Currently this may be available to you at Walgreens stores in California and Arizona.

I thought this was amazing. If it takes off, the amount of money that could be saved in the US is mindboggling, and people would be more willing to get tested for little things like iron or vitamin D or Vitamin B-12, which could go some way in optimizing their own health. So here is hoping that this woman keeps forging on, and doing my very small bit to help spread the word.

For more information, go to the writeups in Fortune or Wired, or visit Theranos's website.

Random information aside, I also know that a few of you only stop by to find out how Gauri and I are doing, so here goes: Gauri is such a happy child...she has a smile and laugh for everybody. She now turns over easily and wriggles forward. She babbles up a storm, observes everything, and gets seriously pissed off if you make her lie on your lap like a regular baby. She needs to be sitting up or standing, dammit, because she is a big girl now. She is a total drama queen too...major crocodile tears that abruptly dry up when you do what she wants you to do. She  has discovered the joys of hair pulling: she yanks my hair around, and I feel like a horse being guided around by the reins. Her favorite thing is grabbing people by the hair and yanking them forward so she can slobber and gnaw on their cheeks/necks.  

Saturday, August 2, 2014

Unpredictability (updated)

That seems to be the general theme now.  My grandpa is in very bad shape: multiple strokes, deafness, etc have left him as a mere shadow of the dynamic and independent person he used to be. He is unbelievably frail, and yet has chugged along in this state for years now. My grandmother, a fiercely independent woman used to insist on taking care of him by herself, generally enjoys excellent health. We eventually persuaded her to move to Mumbai (a city she understandably dislikes, as it is so much less comfortable than Bangalore) by dangling the carrot of a great grandaughter. It worked. They have this beautiful bond: Gauri adores her, and she in turn lights up when she sees Gauri. My mom has always said how reserved her mother is, and yet this woman turns to mush when she sees my baby. I think the time Gauri spends with her on a daily basis has really helped my child too.

Last week, my grandma had two heart attacks. It came out of nowhere as these things always do, and I shudder to think how everything would have gone down had she still insisted on living by herself far away in another city. She is only here because Gauri is here, and that is a rather thought-provoking thing. She is doing okay after an emergency angioplasty with two stents in, but the precariousness of the situation has hit home hard. In all this, it was always my grandpa's health that worried people, and this happens to my grandma.

There was such an air of unreality around the whole thing, and still is. Thankfully, my mother is a rock in such situations, which really helps calm the rest of us down.

My grandma should come home in a few days, and hopefully, all will be well. Gauri is also contributing to the general unpredictability. It seems like she has five different sleeping patterns, and she keeps switching them around to keep me guessing. I'm philosophically opposed to imposing a strict schedule for how she should be spending her days and nights, lack the discipline to do it even if I were so inclined (I think), and also have an incredibly stubborn child who sleeps when she wants to sleep, wakes up when she wants to wake up, and eats when she wants to eat. There were an entire roomful of people determinedly trying to wake her up during her naming ceremony: this child determinedly slept through their efforts and woke up with a bright smile once they all left.  So, imposing a strict schedule to generate predictability as is the popular trend seems to be pretty much a non-starter here.

The one thing I CAN and want to control via schedule is when to give her a massage (my mom's contribution mostly), followed by a bath. These two (especially the massage) really seem to help her sleep. On her best nights, she nods off within an hour of her nightime bath, and wakes up at 6-7 am (!!!!). On other nights, she takes 2-3 hours to sleep, but sleeps till 7 am. Then there are in between nights where she wakes up every 3-4 hours and goes quickly back to sleep.  Slightly worse are the nights where she sleeps quickly but she wakes up every 1-2 hours. The worst nights are when she seems to incorporate Nessum Dorma as her personal motto and keeps me up till 3 am. Sometimes even 5 am. I never know which pattern it will be. I do know if I skip the bath and she has not stayed up all day, I'm likely dead meat.

Another challenge with this baby is boredom. All of us talk to her, and we have long rollicking sing-song conversations. Then there is her gym (somebody gave me this one as a gift and she loves it; should I also buy this one to keep it mixed up? Is the kick and play piano gym better? She also loves to be borne around being shown the ceiling fan (her great friend) in different rooms (rolling eyes).  With all this, this kid still is bored occasionally and tries to screech the house down when we stop playing with her and set her down. It is raining cats and dogs continuously, so I can't take her out till this deluge ends. It is time to introduce touch-and-feel books. Anybody have any recommendations?

Any ideas on books and other ways to keep her entertained would be very welcome.

Updated based on comments: Thank you all for the recommendations! I researched exersaucers, and the one thing I found is that they have a shorter usage window if you have a tall baby.  Gauri has gone from the 25th percentile at birth for height to the 80th percentile by 3 months of age, and she is probably passed the 90th by now, so I think she would have only a short time with it. I hence decided to go with an activity table: I picked this one...you can remove its legs and put it on the floor, so she could use it unsupervised as soon as she can sit up unaided, which should not be too far away. I also got the kick and play piano gym, and I'm trying to restrain myself so as to not also buy the rainforest deluxe one.  

Saturday, July 26, 2014

Wonderbaby

Gauri is 3.5 months old! I want to describe how wonderful these past months have been, but I cannot do it justice. Even when it is not all unicorns and rainbows (like the nights where she decides that sleep is totally overrated and wants to stay up squealing/eating/pooping/
squealing/pooping/eating for 4-6 hours at a stretch), I find myself laughing at her in between the bouts of begging her to go to sleep, trying everything to get her to sleep and failing, flopping down in exhaustion besides her, only to have her eventually get tired of playing by herself, and wail me awake: I had a wonderful audiofile that I recorded at 1:30 am that blogger unfortunately does not let me upload...its is all her concentrated vocal effort to  make me "play" with her, complete with squeals and exasperated "eehhs." I have not been around many babies, so I know not what they do, but I'm rather astonished at her emotional range and how she manages to convey it despite her rather limited vocal range.

But...anyway, occasionally sleeplessness aside, I'm loving it all. First thing, what people frequently observe about goat milk (that it supports robust growth) may be true: Don't know how this kid would have done on a breast milk diet, but as of now, she is literally shooting up and filling out too. I can see her grow in length from day to day...that bit is obviously influenced by genetics too, though and she does have a few very tall sisters. Overall though, I feel as wondrous as Jack after he planted his magic beans sometimes. Btw, if any of you do like to track growth on charts with a quick pictoral readout, this app is a really cool resource: Baby Care, by Breet Jia 

She is in such a hurry to do everything, talk to everything, and eat everything: that enthusiasm is wonderful to watch, but I better start thinking about childproofing soon: Anger gives this child superpowers. When she is mad about something, she can move backwards across the length of kingsize bed in minutes, by just digging in her heels to propel herself backward. She is also making progress with torso strength...she can manage around 70% of a rollover when laid on her back, and she is seriously determined to manage the remaining 30%, though she has no clue what to do with her arm. Update: my mom told me she managed the back to stomach rollover. And I missed it!

I keep coming up with random bizarre nicknames for her: the latest is a scientific name: Goondius gauricus (Goondius  from "goonda," which translates loosely to thug or gangster (she does boss us all around like crazy) and gauricus from Gauri).

If Morgan Freeman were providing commentary for this particular wildlife film, this is what I would feed the teleprompter: Goondius gauricus is a unique and wondrous creature. It kicks like a mule, chomps down like a shark, and has the appetite of a barracuda. It is generally a very, very happy creature that gives ear-splitting smiles and loves to babble. It likes to admire its gorgeous self in the mirror. It has a supersense of when it will be set down on a cold boring bed and readies itself in violent protest to avoid this. It has recently discovered the joys of grabbing and yanking hair and gnawing on plump cheeks (mama is sadly lacking in this regard, but grandmama is proving to be an acceptable chew toy). It has the stubbornness of a mule and shows signs of  very much knowing its own mind. Yet, it also smiles shyly in its sleep when you bend down and whisper "goonda" to it.

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.