Diary of a Birth

SEATI’LEI Washington August 25 1997

By Pramila Jayapal

Once in a rare while, we experience something that tests the core of our emo-tional fiber. It challenges us to question our sacred beliefs. It tears down the elabo-rate screens we erect to hide our human failings. It forces us to find stability inplaces we had not looked before, to learn to breathe calmly when we feel we aregasping for air. It teaches us the long-lost ability of living dayby day.

On February 27, 1997, our son, Janak Jayapal Preston, was born in Bombay,India. At the time of his birth, he had been in utero for only 27weeks, just two-thirds of the time that a full-term baby has before she or he has to face the out-side world. Janak weighed one pound 14 ounces (850 grams) at birth, and mea-sured 13.5 inches long.

It is ironic that our son was born in India. India, my partner- sometimeshidden, always alive in my mind. India, whose role in my life I had returned toreconcile. India that brought me back to who I am- as an Indian and, ulti-mately, as an American. Perhaps he wanted to be born in India, as many of myfriends said when they heard .of his early birth. Perhaps he will go through hisown struggles of identity with this strange, marvelous country, as I have done.

In a wa} Janak’s birth cut my fellowship short. Without a goodbye to Varanasi,where we had lived for six months, to Northern India, which we had exploredfor two years, to our friends to whom we had given our hearts through our trav-els, we left, We left for Bomba a city we had never wanted to be in. Now, in ourtime of need, we embraced its relative modernity and access to technology. Weexisted in Bombay, noticing very little around us a complete departure fromthe way we had immersed ourselves in India for the previous two years.

And yet the whole experience of Janak’s birthand the months that followedwas the ultimate fellowship experience, the ultimate "immersion" in India. Wewould never choose to go through such an experience again. But then perhapsthe greatest lessons are learned through experiences that happen only onceand not out of choice.

This newsletter is my recollection of the whole experience of Janak’s birthand the time after. In some ways, I feel selfish writing a lengthy newsletter aboutthis personal and emotional experience. It is my purging of the experience, talesthat I told to people in bits and pieces but that were too difficult to relate fully atthe time. It will also be Janak’s remembrance one day of how he came into thisworld. Ultimatel3 I decided to write this newsletter because Janak’s birth wasmy last and one ofmy most important fellowship experiences.

I always found it difficult to tell people in India that Iwas pregnant. People looked somewhat embarrassed, asif in mentioning the word "pregnant" I had crossed theline of decency. It seemed strange in a country that had apopulation of one billion people. Perhaps it is becausechildbirth is such an accepted part of marriage, life andrelationships. Or perhaps it is because talking about be-ing pregnant underlines the fact that a sexual act had tohave occurred first, and Indian society is often not com-fortable speaking about sex in any form.

My first clue to this discomfort was when I told myHindi teacher I was pregnant. I used the Hindi phrasethat literally means, "I am pregnant." He looked embar-rassed and then awkwardly told me that I should notuse this phrase, but rather a more indirect phrase thatmeans, "I am with stomach."

I was careful duringmy pregnanc but still often didthings that my concerned Indian friends (and strangersthat I met) felt I should not do. I was not supposed tocarry even one bag of groceries home. Rickshaws werenot advised. Exercise was out, though I could go for veryslow walks if necessary. The advice was never-ending,and I ignored most of it. I ld in my mind pictures ofmyAmerican friends who went running, carried on jobs andlived life with little difference than before their pregnancy.I felt confident that !was strong andmypregnancy wouldbe easy. My last three months, we had decided, we wouldspend in America just to be sure that we were pre-pared.

Underlying my desire to not fuss over my pregnancy

2 PJ-22

was the difference I saw in how pregnant middle- or up-per-class women were treated, and how pregnant lower-class women were treated. The former often went intocomplete bed rest during pregnancy, moving in with theirmothers who could ensure that they controlled their di-ets (which often meant eating as much ghee as possible),did as little work as possible and received daily oil mas-sages to keep them supple and relaxed. For the less for-tunate, economically poorer women, pregnancy is justone .more addition to their tasks. Their work- be itsweeping and cleaning, or working in the fields- isnever disrupted. In the train station, I saw a pregnantsweeper woman lifting a heavy pail of water and thensinking to her knees to scrub the bathroom floors. Shewas huge; her belly seemed to almost touch the floor asshe scrubbed. "The baby’s due in a few weeks," she toldme proudly. Obviously, no one was looking after her toensure her health. She was expected to continue herback-breaking work regardless.

I never got over the fact that many village women,when they deliver their children, are made to go out intothe fields with the animals so that they do not contami-nate their houses. Births are quickand businesslike, noth-ing like the long, laboring, carefully designed processesone sees in America. Thinking about these women, it al-ways made me feel uncomfortable to worry too muchabout my pregnancy and myself. Like so many things inIndia, it did not seem very fair.

In PJ-17, I had written about my troubles finding agynecologist. After months of searching, I did find an ab-

solutely wonderful person--interestingly, a man. He hadbeen recommended to me before, but I had studiouslyavoided him, feeling more comfortable with women. Af-ter sweeping through several women gynecologists withgreat disappointment, I finally turned to him.

Dr. Prakash was sensitive, knowledgeable, caring andgentle. He explained every step to Alan and me in greatdetail, and allowed us to pelt him with questions. Dr.Prakash’s training was from the U.K., and he continuedto practice there three months of the year. As a result, hewas informed and up-to-date on issues of quality of careby physicians, and completely supported women’s rightto know and decide.

How lucky that I found Dr. Prakash when I did. Myfirst visit to him was in mid-January, when I was alreadyfive and a half months pregnant. I told him that I plannedto return to America after the sixth month and deliverthe baby there. In his hands, I finally felt comfortable andbegan to relax.

I had had two routine visits withDr. Prakashby mid-February. My pregnancy was pro-

proached my bed rest with frustration and impatience,as something that perhaps was not really necessar a bigfuss over nothing.

After several days of leaking, Dr. Prakash made thefirst of many home visits to check on me. He concludedthat I must have developed a leak in my amniotic sac."Many times, these leaks willjust seal off," he said. "Evenif it does not completely seal off, you could go on leak-ing for weeks without necessarily putting the baby at risk.The longer the baby can stay inside, the better its chancesof survival. In a worst-case scenario, the leaking will con-tinue and will actually stimulate labor. Let’s hope thatdoes not happen. You are only 26 weeks pregnant, and,quite frankly, a baby born at this gestation stands littlechance of survival."

That was the prelude to a week that would crescendointo our own personal terror. It was now looking as ifwewould not be able to travel to America as planned onMarch 9. In my denial, however, I was still unable to be-lieve that we would be delayed by more than a fewweeks. Alan, who was more realistic, tried to tell me we

would probably have to spend the

for our return to America, iiiIiiii#ii:::#iii:.iiI:::?.i:ii#iii:..iii.:.we should think about where we

ing boxes and making last-minute iiiiliiiiiiilt would deliver the baby. I could notarrangements to say our farewells to tiiiii:" bring myself to enter into that dis-our wonderful friends and India. !:.! cussion, but I did agree that I should

[iIiliiiiiii!liiiiiiiiiiiiiiiiiiiiil ask my mother to fly to VaranasiOn February 18, at5 a.m., I

[iiiiiiiiiiiiiiiiiiiiiiiiii!!iii!ii..:_.:..-......:...:.....::......_..i..ii: iiifrom Bangalore in case my bed rest

awoke to find my bed wet. When I ii!ii/iiii continued.got out ofbed to go to the bathroom, [!ii!l!iiii!liiiiiii!iiiilill!iiiiiliiiiili!ii!iiiil/i.I found I was continuing to drip The flat that we lived in was afluid. It occurred to me briefly, thanks to the many preg- simple two-room apartment on the second floor of anancy books I had read, that my waters had broken but Ibrushed aside the thought quickly. I was only twenty-five and a half weeks pregnant. I was certain that itwas just a weakened bladder.

By 9 a.m., the leaking had not stopped and I was wor-ried. We did not have a phone in our apartment, so Alanand I walked five minutes to the nearest phone booth tocall Dr. Prakash. "For some reason, my bladder seems tohave weakened," I told him. "I am leaking urine." "Areyou sure it is urine?" he asked. "Or is it amniotic fluid?"I told him I did not know. He advised us to take a sampleand drop it off at a nearby lab to test the fluid. "Takecomplete bed rest, and if it continues, or if you developany labor pains, call me immediately," he finished.

Unfortunately, the lab. did not have any of the test instock, and there was no other lab nearby that could per-form the test. Hoping that the leaking would stop on itsown, I stayed indoors, using a bedpan and taking spongebaths given to me by my sister-in-law, who was visitingfrom America. I was having no contractions, and contin-ued to be in denial that this could be amniotic fluid thatwas leaking. I was still planning our return to Americaand our activities for the remaining two weeks. I ap-

house. Our bathroom was a concrete structure off thekitchen that had a squatter toilet. We had no shower andno hot water. To heat water, we would carry a bucket ofwater into the bedroom, and stick an "immersion rod"into it essentially an electric-rod heater. When the wa-ter was hot (and it would get hot only if there was elec-

tricit which was not always), we would carry the bucketof waterback into the bathroom and take a quick shower,gasping as the cold February air hit our chests betweenmugfuls of hot water. As I mentioned, we had no tele-phone. If our landlady was home, we could receive in-coming calls on her phone. For outgoing calls, we had togo to our local phone booth five minutes away. We lovedour apartment, but the conditions were far from idealfor a pregnant woman in fear of going into early labor.

On February 21, my mother flew to Varanasi fromBangalore. As I continued to leak we became more cer-tain that this leak might not seal itself. In our worry, wedid what our American background had taught us to dowe tried to get information and gain some semblance

of control. What did this mean for the baby? Should webe trying to fly back to the States or at least to anothermajor Indian city? What was the possibility that I woulddeliver soon?Dr. Prakash answered these and many other

Institute of Current World Affairs 3

questions to the best of his ability. I do not thinkwe wouldhave received different answers from a physician inAmerica, but in America we would have had severalpeople to consult for second and third opinions. InVaranasi, we felt crippled by not having anyone else totalk to or consult with.

On February 23, Alan finally decided to call my mother’sgynecologist in Bangalore, who is the retired Director of theOBGYN department at a well-known hospital in Banga-lore. Perhaps like any doctor who is consulted from afarwould be, he was extremely conservative about the pos-sibilities of survival of the fetus, and very concernedabout my health. "Once there is a leak in the sac," hesaid, "infection can go in and out. After several days ofleaking, it is highly likely that the fetus is infected andthat the mother is also infected." He asked Alan if Dr.Prakash had started me on a course of antibiotics andsteroids. The first was to control the infection; the sec-ond was to mature the lungs of the baby in case of earlydelivery. Alan’s reply that Dr. Prakash had done neithermet with silence. "Have you at least had an ultrasounddone?" he asked. Another no.

Alan returned from the phonecall in a panic. He was beginning todoubt Dr. Prakash, the one personwe needed desperately to trust atthat point. The lack of information,conflicting information, and the re-alization that this nightmare was ac-tually reality was beginning to hit.We felt helpless on many counts, notknowingwhat to do or what the out-come would be. Furthermore, logistics were extremelydifficult. The fact that we had no phone meant that, in anemergency, we would have to rely on using ourlandlady’s phone (if she happened to be home) or run tothe nearest phone booth. Second, we had no car, and therewas no call-in taxi service in Varanasi. If we had to go tothe hospital we would have to search for someone witha vehicle to take us. Third, I was not being continuouslymonitored, so there was no certainty about the baby’s ormy continued health. In America, if a womanbegins leak-ing, she is immediately taken to the hospital and put onmonitors to ensure that the fetus does not go into respi-ratory distress, and that the mother is safe. In Varanasi,there were no such facilities. Finally, we knew (thoughwe tried to forget) that if the baby happened to be bornin Varanasi, the chances of survival were next to zero. InDr. Prakash’s words, "saving a 26-week-old baby any-where in the world is difficult. Here in Varanasi, we justdo not have the equipment to do so." Dr. Prakash’s strat-egy, therefore, had been to keep the baby in for as longas possible; every day made a difference.

We passed a tense day, waiting for Dr. Prakash. Hehad been called in for a delivery that day, and ended upbeing able to visit us only late at night. Our discussionwas difficult, but open about our concerns. He had been

planning, he said, to give antibiotics that day. He hadbeen hesitant about administering steroids to me, for fearthat they would stimulate contractions. Ultimatel3 how-ever, he prescribed both steroids and antibiotics for me.In retrospect, the steroids played a key part in savingJanak’s life.

Dr. Prakash also agreed that we should have an ul-trasound done the next morning to determine the amountof water lost and the weight of the baby. He had resisteddoing this earlier, he said, because the ultrasound clinicwas half an hour away on bumpy roads, and he did notwant to exacerbate the leak. In addition, Dr. Prakash wasuncertain how the information would change his deci-sions. If, for example, we found out that half the waterwas gone or my cervix had begun to efface [become thin],what would he do? "My dilemma is this," he said hon-estly. "I could do a c-section and hand you a live babbut then the chances of survival are poor. Or, I can donothing, hoping to buy a couple of extra weeks, evendays. If I am inclined to do the latter anyway, what is thepoint of the ultrasound?" Watching Dr. Prakash exposehimself and his thought process in a way that doctors

rarely do was both comforting andterrifying. Comforting, because weunderstood his thinking and his di-lemma. Terrifying, because even ourexpert seemed to be unsure of whatto do. Ultimately, Dr. Prakash’s de-cision to do the ultrasound camedown to a desperate need to knowand assess the situation.

To administer the antibiotic andsteroid injections, we had to find a trained nurse or phy-sician who would come to our house at the odd hours of5 a.m. and 10 p.m. (the timings had to be strictly fol-lowed), since I was not allowed to move. Alan and afriend of ours walked around to several clinics nearby tofind someone, but had no luck. Finally, our friend founda man who was the neighborhood "compounder"equivalent of a physician’s assistant. We approached thisman with a degree of fear because, according to our land-lady, he was "not very clean." Alan watched him like ahawk to ensure he washed his hands, and then we pro-vided him with clean, disposable syringes and needles.For Rs. 70 (about U.S.$2), he agreed to come over for twodays in the early morning and late night. In the morn-ings, he would arrive looking as if he had just rolled outof bed, clothed in a bathrobe over a pair of white cottonpajamas and his hair sticking up on end. He was in his50’s, and thrilled to be performing this service in aforeigner’s house. After the injections, he asked Alan veryseriously if he could ask some questions. It turned outthat he was extremely interested in Alan’s food habits inAmerica! Smothering his laughter, Alan would consci-entiously recite what he ate for breakfast, lunch and din-ner when in America.

On the morning of February 24, I got out of bed for

4 PJ-22

the first time in six days, climbed down the stairs andinto a friend’s van to go to the ultrasound clinic. Therewere no ambulance services in Varanasi, and my friend’svan was rusted and old. I could feel every pothole in theroad slamming into my back. The ultrasound showedthat, although my cervix had not started to efface andmy bag of waters had not actually broken, 50 percent ofthe fluid in my sac had leaked out. It also predicted aweight of 1.1 kilograms (about 2.4 pounds) for the baby,above the minimum threshold of one kilo. Although Dr.Prakash felt it was unlikely that the baby would stay in-side to term, he continued to hope we could buy anothercouple of weeks. However, he warned us that the possi-bility of an early delivery was high. If fluid continued toleak out, it was also possible that the baby could go intorespiratory distress.

It was as if a firecracker had landed in front of us andwas about to explode. We could not think straight. Whatshould we do? Where should we go? Whom should wesee? We considered trying to make it back to the States,butDr. Prakash advised against this in case the baby wasborn in the air. Should we fly to another Indian city, then?He thought about this longer, and inthe end, agreed that this might be agood idea. If we could make it toDelhi or Bombay, and the baby wasbornbefore 32 weeks, it would standa decent chance of living. We did notknow any doctors in these places,and although we could have foundone through a network of familyfriends, this would take time. WouldI make it through the stress of flying?Dr. Prakash could not guarantee anything, but felt it wasworth the risk.

The next 24 hours, we operated on sheer adrenalin.Alan called a friend in Bombay to arrange for an ambu-lance to meet us at the airport. After much maneuver-ing, our friend called to tell us he had arranged it. Wemade reservations for the next day on the one daily flightfrom Varanasi to Bombay that left at 2:30 p.m. and ar-rived at 6 p.m. In order to travel Dr. Prakash would haveto do an internal exam and write a statement to the air-line that I would not go into labor on the plane. He agreedto come to our fiat the next morning before we left.

Fear had begun to set in. I would be trusting myselfand our baby to a gynecologist I did not know and hadnever met, but the alternative of delivering the baby inVaranasi where it would be certain to die was worse. Dr.Prakash vouched for Dr. Soonawalla’s competence, butsaid we should prepare ourselves for the possibility thathe would not have much time for us, given his busyschedule.

Many times in those days, I thanked the forces thatbe for Dr. Prakash. He visited us at home at least threetimes in that week (often as late as 10 p.m.), and fielded

dozens of phone calls. He gaveunstintingly of his time and advice,at the same time listening and re-sponding to our concerns. His en-couragement to fly to Bombay was

Janak’s life. His calm demeanor keptmy stress level down, and almost

iiiiiiiiiii!iii!iii!i!......ii!iiii!iiiiiiIiiii!iiiiiiiiiii: certainly helped prevent me fromhaving stress-induced contractions.

my faith in him is that if he lived in America, I woulduse him again, in spite of all the choices of excellent menand women doctors here.

Together we sat and made quick decisions. It wouldbe Bomba because Dr. Prakash knew of a colleague thathe had met at some conferences who was supposed tobe very good. He was not sure what hospital this DoctorSoonawalla was connected with in Bombay, but he gaveAlan his fax and phone number and advised us to callimmediately. He warned us that many gynecologistswould refuse to take a case where the baby was ofthis gestational age, because chances of survivalwere not high and they would want to keep theirrecord clean. And, Dr. Prakash warned, this gyne-cologist traveled a great deal so he might not evenbe in Bombay. If he were away, we would have to goback to the drawing board.

Alan faxed the clinic immediately, and followed upwith a phone call. Dr. Soonawalla happened to be inBombay at the time, and agreed to take me. "Fly toBombay immediately," his secretary told us, "and checkinto a hospital." "Which one?" Alan asked in confusion.The assistant gave him a few choices, and Alan tookthe one called Breach Candy that was described as"plush." This was not a time for scrimping.

The next day, the day of our proposed departure fromVaranasi, was exactly one week from the day I had be-gun leaking. We planned to just lock up our house andcome back at some point to pack up. For the trip toBombay, we readied small backpacks that we could takeas carry-on luggage, so that we would not have to waitat the Bombay airport to get our bags. We planned toleave for the airport at noon, giving us plenty of time tomake a 2:30 flight. At 11:30, Dr. Prakash arrived at ourhouse to give me an internal exam. According to him,my cervix remained completely undilated and long, soit was extremely unlikely that I would go into labor. Justto be sure, however, he gave me an injection of a laborsuppressant that would last for about five hours.

By 11:45, neither our tickets (which were being deliv-ered) nor the friend who was taking us to the airport hadarrived. Alan paced up and down our terrace, and thenup and down our lane, waiting. Finally, at 12:25, botharrived. Vidhu, our friend, was late because the students

Institute of Current World Affairs 5

of Benaras Hindu University were rioting, burning carsand creating roadblocks. He had gone back to his houseto get a black scarf that he could wave out the windowto show solidarity. The tickets, on the other hang werelate just because they were late.

As I stepped out of the house, I felt the blood rushfrom my head. I steadied myself on my mother’s arm. Imade it to the terrace, before muttering to her that I wasabout to faint. She shouted immediately for Alan, whocame running up from the car and made it just in time tocatch me before I slumped over in a faint.

I came to on the sofa in the flat to a sea of worriedfaces. It was 12:40. Alan had called Dr. Prakash, who saidthat the fainting was probably due to the labor suppres-sant, which also lowersblood pressure. Though still slightly

I was anxious to try and make the plane. Dr. Prakashagreed that we could still go, but asked that we stop by hishouse so that he could checkmeone last time andmake sure Iwas oka3a We reached Dr. Prakash’s house at 12:55. He waswaiting outside for us, with his doctor’s bag. He checked mequickly, andblessedus aswe left. Itwas I p.m.

I was stretched out in the middleseat of this old, lime-green mini-van.Every bounce shot up through myspine, and I could feel liquid con-tinue to trickle out. It was boiling hot,and sweat had gathered on my up-per lip and forehead. Alan wascrouched on the floor of the van infront of my seat, his head stuck be-tween our friend who was driving,and his wife.

make out what was happening. I could feel that I wascontinuing to leak more and more fluid. To distract my-self, I joked with one of the airport boys that I recognizedfrom previous trips.

I knew when I saw Alan’s face that we had missedthe flight. The airline staff had told Alan that the planewas on time, the doors had been closed and the engineshad been started. According to government regulations,they said, once the engines were started, they could notbring the plane back. Alan and I have often wondered,since then, why regulations which are hardly ever ad-hered to were adhered to so stubbornly that day. Alan,Vidhu and my mother alternately pleaded and screamed.Alan even told the crew he would buy every empty seaton the plane if they would bring it back (he later told methat he had no idea what he would do if they had agreed,but he was desperate to make them understand the se-verity of the issue!). It was to no avail.

We had two choices. One was to try and get on a flightto Delhi leaving in about an hour. From there, we couldtry to catch the last connecting flight to Bombay, which

would arrive in Bombay at about 11

Under normal circumstances, we would have hadplenty of time to make it to the airport. That day, how-ever, riots had blocked all city streets. Vidhu, waving hisblack scarf out the window, cursed as he swerved thewheel left and right, trying to make it through the crowdsbut eventually getting stuck in traffic jams for tens of pre-cious minutes. The back of his shirt was drenched withsweat.

Thetensionmountedto unbearable levelsinthe car.Vidhuand his wife argued about which mute we should take, andAlan and Vidhu argued over whether they should pull overto a phone and try and call the airline to askthem to hold theplane. Ultimately, we just went as quickly as possible to theairport without stopping. We pulled up to the gates ofthe air-portterminalat 1:20 p.m.

Airline flights in India rarely, if ever, take off on time.In our two years in India, I think I had been on one flightthat took off on time. We hoped that either the flight hadbeen delayed, or that the crew would hold it for us. Alanand Vidhu ran inside, while my mother helped me intoa wheel chair. I was wheeled to the seats in front of thecheck-in counter. I could hear shouting, but could not

p.m. The other option was to takethe same flight the next day that wehad just missed. Alan called Dr.Prakash, who urged us to wait tillthe next day. He was afraid that thecontinued stress would only makethe leaking worse and possibly trig-ger contractions.

On the edge of tears, we packedourselves back into the rickety van. The air was filled with atremendous sense of demoralization. I felt we had lost thebaby’s only chance, and I was hanging on to sanity by avery thin thread.

We could not face the thought of another long jour-ney through rioting crowdsbackto Varanasi city. Instead,we checked into a hotel about half an hour from the air-port. That night my leaking was non-stop. I hardly slept,worrying that we had missed our opportunity to leaveVaranasi. The next morning, Dr. Prakash, bless his soulmade the longjourney to the hotel to do another internal(the airline required a new certificate dated on the dayof travel). He said he could feel my cervix just beginningto open a little, but I should have no problem making itto Bombay. We decided against the labor suppressant thistime, but Alan insisted that Dr. Prakash show him howto catch the baby, should it arrive unannounced on theplane!

The staff at the check-in counter remembered us andseemed more sympathetic this time. They assured usthree seats where I could lie down. I was exhausted, aswere my mother and Alan. I could no longer feel the babymoving; the amniotic sac had shrunk so much that thebaby had no room to kick. More frightening, my stom-

6 PJ-22

ach had become almost completely fiat with the loss ofso much fluid. Completely unconsciously, though, I wasdelving into every reserve of strength I had. I knew intu-itively that my composure was essential to our makingit to the hospital.

We passed time by playing cards and singing Hindibhajans. The flight had one stop in Lucknow. Just after takingoff from Lucknow, I went to the bathroom and found that Ihad started bleeding. All the control I had imposed on my-selfbegan to crumble. I thought at that minute that I hadlost the baby. I toyed with the idea of not telling Alan forfear that he too would crumble, but eventually decided Ineeded his support to help me think. He talked to thepilot and the airline stewardess, who assured him thatthey would get an airport ambulance to meet us on land-ing, and that we would be the first ones off the flight.They also made an announcement for a doctor on board,but there was none.

The crew never made the announcement to other pas-sengers to stay in their seats and let us through. As istypical on all Indian flights, people leapt up as soon asthe wheels touched the runway, andbegan putting together their bags andstanding in the aisles. Alan pushedhis way through only to find therewas no ambulance waiting. By thetime I made it to the front with mymother, I could see Alan from the topof the stairs, screaming at the crew toget an ambulance. I knew that all ofus were dangerously close to collapseand breakdown. If I could just makeit to the hospital, I kept telling my-self, things would be fine.

yellow, air-conditioned and clean. I could feel my heart-beat beginning to come down, my whole body begin-ning to relax as the realization set in that I was finallyclose to medical help. Nurses in white, starched uniformsand caps surrounded me and began taking all my vitalsigns. Where was the doctor, Dr. Soonawalla? I asked.He will come soon, the head nurse replied.

An hour later, Dr. Soonawalla had still not arrived.Instead, his son, a thirty-something who practices withhim, arrived to tell me that Dr. Soonawalla Sr. had beenunexpectedly called out of town to Delhi! I tried to staycalm, as I listened to him tell me that he and another se-nior doctor in the practice would be taking care of meuntil his father returned the next night from Delhi. "Resttonight," he urged me. "Tomorrow, we will do the testsand see what is happening."

Surprisingly, I slept well. I was exhausted, and forthe first night in man felt that I was as safe as I couldbe. My room had no monitoring equipment, but duringthe night nurses came in every three hours or so to checkthe baby’s heart rate and to take my vital signs, all of

which seemed to be fine.

Alan ended up wheeling my chair to the terminaland eventually found the ambulance ordered for us byour Bombay friend. It was a small minivan with a benchon either side in the back very different from Ameri-can ambulances, but at that moment, the most wonder-ful thing I could have laid my eyes on. I lay down on abench, and grabbed a handrail for stability.

It was rush hour in Bomba a city where traffic rivals theworst in the world. The ambulance turned on a flashing redlight, which helped a little. The ride has stayed a completeblur for me, but Alan told me later that police had waved thecar through when possible and some cars did move to theside to let us pass. I could hear the siren, and I remember atone point Alan and my mother exclaiming because we weregoing down a street on the wrong side ofthe road, but that isthe extentofmymemory.

At the hospital, I wa carried in on a stretcher, andput down in the middle Of the reception area (there wasno emergency room). People walked around me lookingdown curiously until eventually, I was taken up one floorto the labor and maternity ward. My room was cream

The next morning, as I ate mybreakfast and looked out at theocean through the open frenchdoors in my room, I began to onceagain believe that this was just abad dream. Soon I would be outand on the next plane to America.Just then, the head nurse came inand informed me that they wereready to do the ultrasound. It was

a portable machine, the first I had seen in India. The tech-nician expertly greased my stomach, and began tappingaway at the computer. I could see images from the side,but nothing that helped me determine what was hap-pening to my baby. "There is almost no fluid left in yoursac," she said, looking at her screen. I tried to ask hermore questions, but she shook her head. "You’ll have totalk to your doctor."

Dr. Soonawalla’s partner, Dr. Nagarwalla, came inshortly after. "It looks like we will have to terminate thepregnancy," she said to me bluntly. My head was spin-ning. I thought she meant terminate the baby’s life, whenin fact, she meant bring the baby out and end the preg-nancy itself. Tears welled up in my eyes. It was com-pletely real now, and yet unreal. This could not be hap-pening to me! "What are the chances of survival?" I asked,trying desperately to hold back my tears. "Well the cul-ture we did on the fluid that is leaking from your sacshows that there is an infection inside. It is almost cer-tain, given how long you havebeen leaking, that the babyis infected. Given the infection, the gestational age andthe weight, the chances of survival are about 40 percent,"she said. "The good news is that the ultrasound predictsa weight of 1.5 kg (about 3.5 pounds), which is a good

Institute of Current World Affairs 7

weight for a 27-week-old baby." I thought of my niecewho had been born at 6.5 pounds. This was just half ofthat! Dr. Nagarwalla was talking again, telling me thatDr. Soonawalla would be returning from Delhi thatevening. Unless I went into labor or the babybecame dis-tressed, she said, we would wait for him to decide whatto do.

The day was endless. For the first time since I hadstarted leaking, I cried. I cried because I was convincedthat our baby would not live. I cried for failing this tinybeing, for somehow forcing him out too early, for the lostlife he would not get to live. My mother and husbandtried to comfort me, and I tried to comfort them by beingas strong as I could. We were tied together that day moreclosely than ever before, by pain, fear, sorrow and love. Icould not sleep, so Alan and I sang bhajans to my mother,looking out at the water, thinking of our lives in Varanasi,wondering if this was due to something we had done.

No oneknewwhat timeDr. Soonawallawould arrive. Hefinally showed up at 9:45 p.m. He had come straight fromthe airport, and had been briefed on my case. He repeatedsome details of my situation to me to assure me that heknew what was going on. He was anolder man, about 70 years old butlooked not a day older than 60. Ifound out later that we were exceed-ingly lucky to have found him in In-dia at all, since he is often called toattend to patients around the world.

After his internal examination,Dr. Soonawalla confirmed that thebaby would have to come out imme-diately. "There is hardly any fluid left in your sac, as youknow. You have two choices for how the baby shouldcome out. You can try to have a normal deliver}9 or youcan have a cesarean section. If you have a normal deliv-ery, your labor will probably be long and dry, becauseyour cervix remains completely undilated and there isno fluid left to support the process. The baby could be indanger in this case. If you have a cesarean, the baby willhave about a five-to-ten-percent better chance of survivalthan in a vaginal delivery. Obviously, this is surgery,which is never desirable. It is your choice."

draped over me, and moved to a stretcher. Alan had de-cided, after some thought, to watch the surgery. Hewalked with me to the operating theatre, and then left togown himself for the surgery. I was hooked to an ECGmonitor, and a catheter was inserted into my bladder.The anesthesiologist came and introduced himself to meand asked if I was ready for the anesthesia to be admin-istered. Because of a missing disc in my lower back, Ihad to be given general anesthesia instead of a spinal epi-dural. The anesthesiologist began to administer the an-esthesia. It was as if little pieces of ice were being insertedinto my vein; as they melted, they flooded my wholebody with cold. I did not have my contact lenses on; Icould see only distant blurs. I thought I saw Alan’s eyessmiling at me over his mouth mask from where he wasstanding about three feet past my feet. That was the lastmemory I had.

I awoke at about 5 a.m. My lower back felt like it wastied to a wooden plank. I tried to move and winced inpain. I had an IV in one arm, and I could feel the needlein my skin as I attempted to change positions. I must havebeen moaning, because Alan came to my side immedi-ately from the chair he had been sitting in.

We had come to Bombay to give the baby the bestpossible chance of survival, so the decision was not dif-ficult. At 10:15 p.m., we told Dr. Soonawalla that we haddecided to have the C-section. He went immediately toprepare for the operation, and asked the nurses to pre-pare me for surgerischeduled for 10:45 p.m. As he leftthe room, it seemed i:ronic that I had had such grandioseideas about interviewing and choosing a gynecologist.Now, here I was trusting myself to a man who I had nevereven met until half an hour before- and feeling absolutelyluckythat I evenhadsomebodytowhomto trust myself.

I was cleaned and prepared for surger a green cloth

"The baby?" I croaked’my voicehoarse from the anesthesia. "Thebaby’s okay," he said, stroking my

"Bo-head. "Boy or girl?" I asked, y,he replied tenderly. And then, ten-tatively, "He is a little lighter thanthey thought he would be. He’s 850grams." I could not comprehendwhat he was saying. All I knew wasthat the baby was alive.

It was only later when I was fully awake that Alantold me about the operation. He dealt with it, he said, bynot looking at my face, by pretending that it was some-one else being cut up on the table. It took only fifteenminutes or so to bring the baby out, and double that timeto stitch, me up. There was so little fluid left in the sacthat the. doctor had to actually scrape the baby off themembrane. Janak was immediately rushed to the Neo-natal Intensive Care Unit (NICU), which was down thehall from the operating theatre. He was put on a ventila-tor, and antibiotics were started immediately. Many daysafter Janak’s birth, Alan told me he would never watch aC-section again, but he was glad he had been there. I,too, was glad. It provided a link between the end of mypregnancy and Janak’s birth that would otherwise havebeen missing. To hear Alan talk about how Janak wasborn made it that much more real for me.

I was still groggy when I finally woke up some hourslater. I was to be shifted from my labor room to a mater-nity room. "When can I see the baby?" I asked. They toldme I could go any time, but perhaps I wanted to waitthat evening when I felt a little stronger. I could not wait,nor could I understand how they could think I would

8 PJ-22

want to wait. I wanted to see Janak immediately. Theyagreed to wheelme to the NICU.

At the outside door, I left the wheelchair andmy shoesand, leaning heavily on one of the nurses, walked throughthe small entry room. It had a sink a refrigerator, a two-burner stove with a big sterilization pot and a big woodencloset. Underneath the closet were several pairs of rub-ber slippers. I put on a pair, and walked through a doorwith a small window that led to the main room of theNICU. At the instruction of the nurses, I washed myhands in the sinknear the door and put on a sterile gown.

Janak was being kept in a smaller room just off thebig room. He was lying in one of two infant warmers inthe room. The warmer was a small plastic rectangularbox crib with no cover, about two feet wide and threefeet long. A couple of feet above the box was a radiantheater, electric rods that let off ambient heat. Janak wason a thin mattress in the middle of the crib.

I expected the worst. Alan had prepared me thatJanak’s skin would be shriveled and that he would betiny. Perhaps it is the essence of parenthood that his ug-liness seemed beautiful to us. I hadnever imagined that he would be astiny as he seemed. His length wasonly about one and half ofmy hands.He was very fair, just bones with skinloosely laid over it. One arm wasweighted down with an IV and aheavy splint so that he could notmove it. He had a test tube attachedto his penis, so that they could mea-sure the amount of urine he was

spend as much time as we wanted in the NICU, but en-try of anyone else was strictly prohibited to minimizethe risk of infection to these tiny babies.

Throughout Janak’s stay in the hospital we were inthe NICU entire days, with breaks only to eat, sleep, anddo short errands. We slowly became used to the NICUenvironment, where alarms constantly sounded andmonitors beeped. Perhaps the most terrifying momentsin those early days were when Janak, like most prema-ture babies, would have apnea spells where he wouldstop breathing for more than 20 seconds. The alarmswould sound loudly, the ECG monitors showed fiat lines,and we would see him go completely limp. The nurseswould rush in to bring him backto consciousnessby flick-ing his toes or palpating his chest. According to our doc-tor, the apnea spells were (simplistically put) becauseJanak’s brain and lungs were not fully developed, andthe brain would forget to send messages for the lungs tobreathe. We learned to watch for these spells, and some-times even palpated Janak ourselves.

passing. His head looked huge compared to the rest ofhis body. His knees were bony protrusions in the middleof sticks. I could not think of much except that he wasalive, and, though tiny, all his organs seemed perfectlydeveloped. Over his head, he had a plastic oxygen hoodthat looked like a cake cover. It went down to his neckand had a small hole in the top where a tube was insertedthat piped in supplemental oxygen. He had three ECGpads on his chest, which were so big they covered hisentire bony chest. A feeding tube that led to his stomachwas inserted into his nose.

I could not stay for more than five minutes. My stom-ach was screaming in pain, and I felt my whole bodychoked with emotion. This was my baby. I had nottouched him yet, but I had seen him and he was alive.

I was in the hospital for five days. My new room wassmaller than my old one, with no view, but just as clean.My hospital bed was adjustable, and there was an arm-chair on the side for visitors. I had an attached bathroomthat was as big as my room, with yellow tiled walls. Itwas one of the cleanest bathrooms I had ever seen in In-dia. Every da3 Janak’s pediatrician and my gynecolo-gist visited me. Parents of NICU babies were allowed to

We steeled ourselves to watch as nurses pricked himwith needles, clamped devices on to his arms and legs to

measure blood pressure and bloodoxygen levels, and stuck ECG leadson his chest. We learned to ask dur-ing that first month only how he wasdoing at that moment, because weknew it could change from minuteto minute.

Janak was born with a severe in-fection that sent his white blood cellcount soaring as his immune system

tried to combat the infection. We took some heart in thefact that his immune system was functioning at all. Theinfection raged on for two weeks stubbornly refusing torespond to over seven different antibiotics. Finally, onMarch 10, Janak’s white blood cell counts began to comedown in response to a new anti-fungal drug.

During those first few weeks, we did not know ifJanakwould live or die. The doctors could offer little con-solation. Our daily thought was simply that he wouldmake it to the next day. Once his infection was controlled,our attention turned to his feeding and weight. Janak’sdigestive organs remained undeveloped, unable to di-gest food. For the first few days after birth, he was fedonly glucose. About five days after birth, he was given.2cc of milk (about 30 drops). Two hours after giving themilk, the nurses would aspirate his stomach, whichmeant putting a syringe to one end of his nose tubethrough which he was being fed, and pulling up theplunger. If the milk remained undigested in his stom-ach, it would appear in the tube. Aspirations meant thathe would not be given milk again for another day. Janakwas unable to tolerate any feeds for two weeks. Hisweight dropped quickly to just over one pound.Once he was able to tolerate one cc of milk, the doc-

Institute of Current World Affairs 9

tors increased this amount by one cc per day. treading, toppled me over the brink of sensibility.

Janak was in the hospital for two and a half months.After the first month, we knew he would live. Then itbecame a matter of time, and a question of what othereffects he might suffer due to his prematurity. Westruggled now with issues not of Janak’s mortality, butof his morbidity. In retrospect, Janak did unbelievablywell given the possibilities premature babies of his ageoften have to face. However, we never relaxed. Just aswe thought he had turned the corner, he would developnew problems. Whether due to a sky-rocketing eosino-phil [a form of white cells] count or symptoms thatseemed to indicate toxoplasmosis or cytomegalovirus,Janak’s condition was far from stable. His weight alsocaused us great anxiety. It took him two and a half weeksto regain his birthweight, and then another 1.5 monthsto gain another two pounds. Janak was weighed once aday at 5 a.m. Our first question upon arrival at the NICUwas, "What is his weight?" Every gram counted; to talkof weight gain in terms of pounds or kilograms seemedsadly unthinkable.

While we worried about whether or not Janak wouldlive, no other worries seemed impor-tant. Perhaps it is human nature tonarrow down one’s focus during acrisis, just to make it through. Oncewe knewJanakwould live, it was in-evitable that other smaller frustra-tions and stress factors would beginto affect us. We were thankful for hislife, but still ached to hold him, to behis primary caregivers, to enjoy andlove him without caution. We

It was a full two months before I could even try nurs-ing Janak. Even then, he had a very weak suck and wasunable to get much milk. The nurses insisted that I holdhim in a certain position, which made it very difficult forhim to reach the nipple. Finally, after reading some ofmy books, I found that all the books recommended a dif-ferent hold during nursing for premature babies. TheNICU nurses were not very happy when I changed thehold, but it worked much better.

watched as full-term babies came in and out of the NICU,or as nurses and glowing mothers carried their healthybabies outside in the maternity wards.

There were no support services at the hospital. I wasgoing through guilt about Janak’s early arrival into theworld, and wished that I had a qualified counselorto .speak with. The mother of the other prematurebaby in the unit, Seema, was going through similarfeelings, I found out. But she was convinced that itwas definitely her fault, and not something she shouldtalk about. This was consistent with the Indian cul-tural norms that frown on people who discuss theirproblems openly. I also wished, on a practical level,that I had a lactation counselor. The hospital had noelectric breast pump, so critical to helping mothersof prematures establish and maintain a healthy milksupply. With the pediatrician’s support, I initiatedmanual pumping every two to three hours as soon asJanak was born. The nurses actually encouraged me notto pump, since I was getting so little milk, but I knewfrom my books that if I did not, my supply would neverincrease. The nurses often made unintentionally dispar-aging remarks about the small quantity of milk that I wasproducing which, on the emotionally shaky ground I was

One of the most stressful issues we faced was thatwe did not trust the nursing staff. Janak’s two pediatri-cians could hold their own against American physiciansin terms of knowledge (if not practical experience). Thenurses, however, were little more than competent assis-tants, able to keep the unit clean, to change the babies,and possessing some basic knowledge of emergency care.Our distrust was fostered by the fact that we often cameinto the unit and found the nurses ignoring some of thedoctors’ specific instructions. For example, it is wellknown that an excess of supplemental oxygen can causeretinopathy of prematurity (ROP). To protect against this,

supplemental oxygen should beclosely monitored so that the baby’sblood oxygen level does not riseabove 95 percent. Although we hadheard the doctors instruct the nursesoften on the importance of this, weoften found the monitors showing99 percent blood oxygen levels.

We had also been reading doz-ens of articles sent to us by a close

friend in Seattle who works at Children’s Hospital. Manyof these articles discussed new findings that showed howhandling of babies and their hospital environment canhave long-term developmental effects.

American NICUs today focus heavily on ancillary be-haviors that can affect later development of prematurebabies. Limiting noise, creating a warm and secure sleep-ing environment, speaking softly and handling babiesgently are all standard practices in America. In India,however, the NICUs are too new and the nurses un-trained as yet to incorporate these practices. The focushas been on mortality, rather than on looking down theroad at developmental issues.

Having read these articles and new research findings,we were horrified to see the nurses try to wake up Janakby clapping their hands in front of his face or ears, flick-ing his feet to make him cry, or holding him directly upto sunlight. They felt that he should learn to take milkthrough his mouth instead of using the naso-gastric tubefor feeding (in America, many premature babies are of-ten released with the tubes still in), so they would holdopen his mouth and pour the milk in as he screamed.The discrepancy in how the nurses treated Janakand how

10 PJ-22

our articles talked about treating babies was often toomuch for us to bear. We constantly weighed our discom-fort with leaving him in the nurses’ care with the risk oftaking him out of the hospital too early. Our lack of trustin the nurses, combined with our high stress level oftenmeant that we micro-managed the nurses, which couldnot have been much fun for them either.

Our pediatrician himself recognized the gaps in "soft"care. "We now have the hard equipment," he once toldus. "Now we need to work on the nursing skills. InAmerica, nurses are equals to doctors, with their ownareas of specialty and training. They interact on the samelevel discussing issues and care. Here, nurses are gener-ally afraid of the doctors, and are merely followingorders."

There were other stresses too. Janak often neededmedication that was too expensive or rare for the hospi-tal to stock. The hospital policy was that the parents wereresponsible for getting the medicines. The nurses wouldcall us at odd hours of the day and night to tell us thatthey urgently needed a certain medication or a particu-lar size of neonatal catheter. This involved our taking taxisaround the city of Bombay (whichwe did not know) to dozens of phar-macies to find one that was open andstocked the particular item. Accord-ing to Seema, this was standard prac-tice for most hospitals. In fact, sheand her husband told us, BreachCandy was much better than most.Most would not even stock standarditems like needles and gauze!

small club for a few weeks, and then renting a room insomeone’s house. This system, called "paying guest ac-commodation" is very popular, but still not cheap. Forour one bedroom and attached bathroom, we paid al-most U.S.$500 a month. When Janak finally was ready toleave the hospital, we moved to another house that be-longed to friends of Alan’s parents. They were in Europeat the time, and generously agreed to let us share thehouse with their 25-year-old son.

Financially, although we had backing of the Instituteof Current World Affairs, it was complicated to get suffi-cient funds from America into India to meet our medicalexpenses. The hospital did not accept credit cards orchecks. We had to pay our bills with Indian-rupee cash.We did not have abank account in India, and the amountof foreign exchange one is allowed to bring in is limited.We were constantly maneuvering to get sufficient cash.In addition, we had to prepay up to 5-7 days of care (thehospital had no customer-credit billing at all).

To add insult to injur as a U.S. permanent resident,I was supposed to return to the States at least once a year.My year would officially expire on April 20. We had

Compounding all the medical issues was our unstableliving situation. It was essential that we live close to thehospital, which was located in a very upscale part ofBombay. The first week I was in the hospital my motherand Alan had stayed with a friend in their small apart-ment. The arrangement was far from ideal however. Ourfriend and her husband lived with their son and daugh-ter-in-law in a two-bedroom apartment. Although theyinsisted that we could stay as long as we needed, addingthree more bodies was not realistic.

Two years ago, Bombay rents were the highest in theworld; today, they remain in the top three. We tried des-perately to find an apartment to rent without success.No one was willing to rent for just a few months, andeven if they had been, they would have required a de-posit worth the value ofthe apartment itself. For apartmentsin Breach Candy, this could mean the equivalent ofU.S.$300,000 and up. The deposit policy was to protectowners against tenants who moved in and decided neverto leave. Indian laws favor the occupants of an apartmentrather than the owners, and there have been thousandsof cases of renters refusing to leave an apartment.

We ended up moving from our friend’s house to a

planned our return in March partlybecause of this issue. If I failed to re-turn by April 20, I would lose mygreen card, and not be allowed backinto the U.S, Alan went to the U.S.consulate, armed With letters fromour doctor explaining that Janakwas in critical condition and wouldbe unable to leave the hospital byApril 20. Alan spoke with severalU.S. embassy officials, who were

sympathetic but firm. According to them, we had onlytwo options: 1) allow the green card to expire and applyfor a new one, which could take anywhere from sixmonths to a year to get; 2) fly to American soil beforeApril 20, touch down and fly back to Bombay immedi-ately. Alan tried to explain that we could not, under anycircumstances, leave the baby but it was to no avail.

Dozens of phone calls, letters, and visits to the em-bassy later, it was an ICWA trustee, Kitty Hempstone,who finally rescued us. Kitty’s pleas to the State Depart-ment (reinforced by the fact that her ICWA-Fellow hus-band had been a U.S. Ambassador) allowed the U.S. Em-bassy in Bombay to expedite an application for a specialvisa that would allow me backinto the States, after whichtime I would have to apply for a newgreen card. Wethought our trouble was over, but it continued. After fill-ing out numerous forms, paying hundreds of dollars andsubmitting myself to a complete physical examination(including x-rays and an AIDS test), I was told that myself-reported complaint of a missing disc in my spine(which I have always had and always disclosed on themedical forms) could be a symptom of tuberculosis. Iwould now have to undergo a series of tests to deter-mine if I had T.B. "Ridiculous!" I said indignantly. I had

Institute of Current World Affairs 11

had a T.B. test in the States and it was negative, but thedoctor was adamant. "I am the one who has to certifythat you will not get T.B. If you land up in the States andare diagnosed with T.B., they will come after me." Iscreamed and cried, but in the end had to submit myselfto more x-rays, which eventually turned out negative.

When I was handed my visa almost two months later,I decided that I would finally take the plunge that I havealways resisted: upon returning to the U.S., I would ap-ply for U.S. citizenship. My loyalty to India was great,but I hadbeen beaten downby the only bureaucracy thateasily rivals Indian bureaucracy: the United States Im-.migration and Naturalization Service.

In the end, we made it through those two and a halfmonths because we had to. As long as Janak was alive,we wanted to appreciate this baby, who was more spe-cial than anything we could ever imagine. His life, al-most taken away and then given back to us, was price-less.

Many of my friends in America have asked me aboutthe medical care we received in India. Especially givenmy newsletter, PJ-14 "America: Look-ing Back," where I wistfully remem-bered the medical care available inAmerica that seemed to be completelyunavailable in India, people worriedthat our experience with Janak’s carewould be as bad. Interestingly, manyof my friends indicated that perhapsI did not remember American medi-cal care properly. They told me sto-ries about incompetence and lack ofcaring in the U.S. health system that rivaled my tales ofhealth care in India.

ambulances, phones, and mobile equipment. Even in bigIndian cities like Bombay and Delhi, these often do notexist. Subtler is the gap in care when it comes to some ofthe longer-term developmental issues of premature ba-bies. Much of this gap was due to the level and skill ofthe nurses, and the relatively short time that the BreachCandy NICU had been operating.

In describing our experience with Janak’s birth, I amalso acutely aware of how completely unrepresentativeit is of the care available to the general Indian public. Dr.Soonawalla’s assistant had described Breach Candy Hos-pital as "plush," and although it might not seem that waycompared to an American hospital, it earned its descrip-tion compared to other Indian hospitals I have seen. Asa private hospital and one of the best in the country,Breach Candy charges about U.S.$70 a night for a bed ina private room with attached bath. To give more perspec-tive, the total bill for two and a half months of Janak’scare (including bed charges, doctors’ visits and medi-cines) was U.S.$5,600. For my five days in the hospitalincluding operation and doctors fees, we paid U.S.$1,800.And all this for some of the finest doctors and facilitiesin all of India. While this sounds outrageously cheap for

I do not say, for a minute, that health care is perfectin America. In fact, my experiences with Janak’s medicalcare showed me that medicine has two sides to it: tech-nolog and heart. It is far easier to find the former inAmerica, and the latter in India. And yet, when the chipsare down, would any of us actually choose to be in Indiafor a medical emergency? There is something to be saidfor America’s reputation as a leader in medical technol-ogy, information, and knowledge. Much of the informa-tion and knowledge has yet to filter back to India; andmany of the latest procedures and drugs cannot filterback, by virtue of the simple fact that they are far tooexpensive for the majority of Indians.

Perhaps the most relevant statement I can make aboutJanak’s medical care is that he lived. This, above any-thing else, speaks volumes. At the same time, I must ad-mit that Alan and I wished often that we had made itback to America before Janak’s birth. The terror that weexperienced in Varanasi at being cut off from informa-tion, from medical help, from technology itself is unfor-gettable. We in America take for granted luxuries like

Westerners, the average Indianearning U.S.$5-8,000 per year isnecessarily excluded.

After striving to live a Fellow’slife that did not take full advantageof the privileged situation we knewwe were in, Alan and I felt uncom-fortable to suddenly be catapultedinto a situation where we were tak-ing advantage of something avail-

able only to the rich. I thought many times about the thou-sands maybe millions of women who need butnever get access to the medical care that we had. The dif-ference is in the results: Janak lived and thrived. Theirbabies are just a fraction of the tens of millions of infantdeaths that occur in India even today in the modern 20th

century. It, among many other things, was just one morein a series of issues that I struggled with constantly dur-ing my two years in India.

The Breach Candy NICU had only five beds. Twowere considered "critical" beds, and were in the smallroom adjoining the main room. A modern Hewlett-Packard monitor was attached to one bed, with capabili-ties for blood-pressure and heart-rate monitoring. Be-tween the beds was another, very new and modern ven-tilator. Another ventilator was housed in the IntensiveCare Unit upstairs in the hospital and was broughtdownstairs when needed. At the time of Janak’s birth,there was another extremely premature baby in the NICUwho was on a ventilator so the second ventilator wasbrought down for Janak. Each NICU bed was connectedto a three-lead ECG monitor, and there were two stand-alone pulse oximeters (to measure blood oxygen) in theunit. Interestingly (particularly for someone like me who

12 PJ-22

used to sell defibrillators), there was no defibrillator lo-cated in the unit. Unlike most hospitals across India,Breach Candy also had facilities for portable ultrasoundsand x-rays.

The sanitation practices in the hospital, contrary towhat many might think, were excellent. Partly becauseof Breach Candy’s reputation and partly because the doc-tor-in-charge (our pediatrician) was well aware of theneed for sterility in an NICU setting, we found peoplefairly scrupulous about cleanliness. Cleaning men camethrough the general wards and the NICU several times aday to sweep and mop the floors. The nurses in the NICUcarried out a thorough cleaning of all the surfaces in theunit twice a day. All utensils were sterilized in a hugepot of boiling water for over ten minutes. Doctors andnurses always carefully washed their hands thoroughly(there were detailed instructions on hand washing abovethe sink), and used sterilium and other liquid disinfec-tants before touching the babies.

Our pediatrician, Dr. Mahesh Balsekar, had startedthe Breach Candy NICU just three years ago. He wastrained in India and had also done some observation in-ternships in London and in America.Coming from a wealthy family andwith a wife (a gynecologist) who ishalf English, Mahesh had traveledabroad many times. He often spoketo us with wonderment about histhree months at Johns Hopkins Uni-versity, about the enormous size ofthe NICU there, and the technology.Although his knowledge of the fieldwas excellent, Mahesh was not

cellular phone number so that we could call him at anytime. Especially in the beginning, when Janak’s condi-tion was critical, he would visit the NICU a minimum oftwice a day, often calling in between to get updates onhis status. He worked at Breach Candy part time so thathe could also work at a public hospital in Bomba wheremany of his patients could not afford to pay for care.

Dr. Balsekar often went well beyond the call of duty.One incident stands out. Janak’s need for frequentblood transfusions created tremendous stress for us,because we did not want to use the hospital bloodbank but also did not know enough people in Bombayto line up a slew of donors. Because of my C-section, myhemoglobin levels were too low to give blood. Alan hadbeen on anti-malarial prophylactics and therefore wasalso not able to donate his blood. One family friendturned out to be Janak’s blood type, and she managed togive enough blood for three transfusions. When she wasno longer allowed to give, we did not know what wewould do. At the time of Janak’s fourth transfusion, wewere desperate enough to decide that I would have togive blood. Dr. Balsekar would try and convince the hos-pital blood bank to accept the blood in spite of the low

trained as a neo-natologist. His colleague, Dr. Cyrus Con-tractor, had worked in an NICU in Australia for severalyears, but was also not a neonatologist.

In the beginning, this scared us. However, we real-ized that our choices in neonatologists were non-existent.Neonatology is a new field in India. The first NICUsopened in the early 90s, but remained quite sparselyequipped. It is no surprise, then, that medical collegesdo not offer specialized training in the field. Mahesh andCyrus, though not officially trained in the field, did knowa tremendous amount from their reading and, more inCyrus’ case, from their training abroad.

During our whole experience and even today, I ammost thankful for the relationship we had with our doc-tor. Dr. Balsekar, from the beginning, treated Janak, Alanand me as his patients. That means he felt he was respon-sible for our well being, as well as Janak’s. He forged apersonal relationship with us in the early days, talkingto us about America and his visits here and asking aboutour lives.

Dr. Balsekar was availalJle to us day and night. Onour first meeting, he gave us his home number and his

counts. The morning that I was togive the blood, I came in to the hos-pital to find Janak’s blood transfu-sion in progress. "Whose blood isthis?" I asked, puzzled. To myamazement, I was told that Dr.Balsekar had decided to donateblood for Janak. When I tried tothank Dr. Balsekar, he shrugged itoff, saying lightly, "We often dothis," a statement I knew to be false

from the NICU residents and nurses.

Dr. Balsekar took it upon himself to be not justJanak’s doctor, but the guardian of our fragile psy-chological stability. A few days after Janak’s birth,we were in the NICU when Janak’s IV needle becamedislodged. At his weight ofjust over a pound at the time,every drop of blood was critical. We watched anxiouslyas blood trickled out of his tiny veins. The nurses tookoff his splint to re-enter the IV, but as they peeled theplaster from his arm, his tender skin also peeled off leav-ing raw flesh underneath. Janak, who could not even cryfor many months after birth, gave a guttural, strangledscream that sounded more like a baby lamb bleating be-fore slaughter. When I heard this and saw him draw hislegs up to his chest in pain, the weeks of suppressed ten-sion and accumulated stress exploded. I left the room cry-ing uncontrollably, just as Dr. Balsekar was entering. Heasked me what was happening, and Ijust shookmy head,unable to answer.

Before leaving the NICU that day, Dr. Balsekar askedAlan and me to sit down with him. Gently, he discussedwith us the need for us to do things that would relieveour stress. "This will be a long process. We have to take

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Janak’s health one day at a time. Typically what happensis that one’s adrenalin kicks in for the first week, and youare able to continue. But long-term, it is the low-gradestress that persists and will gradually build up and ex-plode if it is not addressed. What kinds of things do youlike to do?" he asked. Within minutes, he had arrangedfor us to swim at the beautiful club next to the hospitalof which he was a member, and to accompany him to aclassical Indian music concert that weekend. "Don’tworry," he said, guessing that we would be nervous toleave Janak’s side for several hours, "you will be withme, and I will have my pager so we’ll know immedi-ately if anything is going on."

Over the course of the several months that we werein Bombay, Mahesh and his wife Sheila took care of us ina way that I doubt modern physicians take care of peoplein America. They invited us to their house for dinner,helped us to find places to live in Bomba and put upwith all our questioning on medical topic. Mahesh en-couraged us to call him at any time of the day or night ifwe had questions or concerns (we only did this a fewtimes, because our Western attitudes to disturbing peopleunnecessarily were ingrained). Hewas used to this, he said, because In-dian patients considered it a right.One night when we were at hishouse for dinner, the phone rangnon-stop, with many of the calls be-ing for small things that could haveeasily waited until morning. WhenJanak was ready to leave the hospi-tal it was Mahesh who drove ushome. A few days after cominghome from the hospital Mahesh and

would have had to wait possibly weeks for anappointment.

Walking into Children’s Hospital, we experienced ourfirst (and perhaps greatest) culture shock. The walls werebrightly painted with cartoon figures in primary colors.Fish tanks and giant Mickey Mouse wooden figures deco-rated the hallways. Corridors, sections of the hospital andelevators were named for animals and decorated accord-ingly. We checked in at a desk, where we filled out forms,provided our insurance card so that the company couldbe billed directly, and then were given a small plastic bluecard for Janak that we could show every time we visited.

In the waiting room, children played video games,watched movies and careened about on mini-playgroundfurniture. Toys and books littered the room.

Sheila made a house call on their way back from a din-ner engagement to relieve our worry about a problemJanakwas having.

Mahesh’s genuine interest in us, the long amount oftime he was willing to spend with us discussing Janak’shealth or even just in social conversation, and the littlethings he and his wife did for us made us wonder if thiswas what the "family physician" of old (or perhaps thefamily doctor that still exists in rural America) was like:providing medical care based on relationships, ratherthan on money and schedules. We felt extremely fortu-nate to have had Mahesh as our doctor, in spite of hislack of practical experience with certain issues inneonatology.

On June 4, we returned with Janak to America. Hewas just under six pounds at the time, over three timeshis birth weight. Two days after we arrived in Seattle,we took him to the neurosurgery department ofChildren’s Hospital. His head was growing much fasterthan normal and Dr. Balsekar had advised us to see aneurosurgeon immediately upon our return to America.Thanks to a good friend who worked at Children’s, wehad been squeezed in to the schedule; otherwise, we

When the neurosurgeon came to see Janak, he did aten-minute examination. "There is something going onin his head," he said, referring to Janak’s large head size."I’d like to have a brain CT scan done on him now." Wewere ushered downstairs to a sophisticated room, where

they strapped Janak into an infantCT scan tunnel. Within ten minutes,we had found out that althoughthere was a little extra fluid aboveone of the ventricles in Janak’s brain,there was no need for any immedi-ate surgery or other action. Whenour bill arrived some weeks later,it was for approximately $1,500plus another $750 consultationfee for the neurosurgeon.

What would have it been like in a similar situation inIndia? After seeing Children’s, even Breach Candy oneof the best hospitals in India- seemed tattered and old.Breach Candy’s plain yellow walls, which had seemedso friendly at the time, suddenly appeared peeling in ret-rospect. What we had thought was modem then now be-longed in the Stone Ages. Breach Candy did not have aneurosurgery department or a CT scan. A neurosurgeonwould have had to have been found and then called tothe hospital for consultation (orDr. Balsekar would havedone the diagnosis). We would have had to take Jan.ak toanother clinic for the scan. The neurosurgeon and/orDr.Balsekar would have spent a good hour discussing thesituation with us. If we had to go to a different clinic, Dr.Balsekar or one of the senior resident doctors would haveaccompanied us there. Results would take the rest of theday to obtain. Our bill would have been, at most, Rs. 3,000(less than $100) for the neurosurgeon, and perhaps an-other Rs. 5,000 for the CT scan.

So, in the end, would I rather have the extra time withmy doctor friend (who is not necessarily trained and ex-perienced in the field of diagnosis), or ten minutes witha trained but arms-length neurosurgeon? Let’s face it, Ican’t have my cake and eat it too. In returning to a very

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technologically competent environment with highlytrained professionals, I have realized that I have to giveup my desires for a doctor who is available to us dayand nightby pager and cellular phone, whose home num-ber is one of the first things he gives to patients, who iswilling to spend hours on end discussing our questions.

We have found a wonderful pediatrician in Seattle.She cares about us and about Janak, but she still workswithin the American medical system. That means our ap-pointments with her are generally 15-20 minutes. IfJanakis having problems, I call the clinic and am connectedwith a nurse who tries to answer my questions. She willcheck with the doctor, and convey messages to me. If Ineed to schedule an appointment, I sometimes have towait four to six weeks, unless it’s an emergency.

If we could paint the perfect scenario, it would be tohave a doctor like Dr. Balsekar with access to the special-ists and technology of America. That doesn’t seemrealistic now, but I can still dream about a day wheneveryone has access to medical care that has not just theexpertise and technology of America, but the heartof India.

Janak has been alive for six months now and weighsa hefty 13 pounds. In medical terms, he is three monthsold, corrected age. To arrive at his corrected age, wesubtract the number of months he was premature(three) from the total number of months he has been

alive (six). His corrected age is what we should lookat for developmental milestones. And I must say, itis easier to say he is three months old when peopleask, so that don’t have to go into long explanationsof why he is so small for six months.

Janak is enrolled in a high-risk follow-up program atthe University of Washington. He will be watched andtested at various points along the way, to determine what

if any effects his early birth have had on his devel-opment. We know the road ahead is still long, but wefeel that he and we are incredibly lucky. There have al-ready been several scares, but they have miraculouslyresolved themselves. The neurosurgeon at Children’sHospital told us we were one of the luckiest families hehad ever seen.

The name Janak is the name of the King of all Kings,father of Sita, from the famous Indian epic "TheRamayana." We had chosen it on a lark, when we wentto a wedding in Rajasthan and the groom-to-be wasnamed Janak. Alan and I looked at each other, raised oureyebrows and found that we had finally found an Indianboy’s name that we both liked. And it is not as if we hadmuch time to decide at the end.

No matter what happens later, Janak is our miracleboy, King of all Kings in our mind, here on this earthbecause he persevered, and because somewhere in theplans of this Universe, he was granted a space. GI

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