And so it begins....

On the second day of her life, J was greeted by two sleep deprived parents, one stoic grandma, an entourage of doctors and a more than a dozen nurses and midwives.....
Despite having slept soundly, only to be woken up for regular feeds, J continued to be blissfully unaware of the turmoil around her....she slept through most of the day, but my mid-day, the SHO started having doubts regarding her food intake. My milk had not yet come in (well, C-section with the added stress of the overwhelming events in the last 24 hours hardly helped) and J was beginning to look more floppy than the previous day. I was asked to feed her every hour or so, so that she would not get dehydrated. More blood was drawn from J to check for thyroid functions, to rule out leukemia and a whole lot of other conditions. She would shriek and protest each time she was pricked on her foot....but then eventually settle down. She seemed content in her green swaddle blanket, but within 24 hours of her birth, she seemed to have a preferance.....she wanted her palms exposed, no matter how snugly she was swaddled, within a few minutes, she would get her hands out. My little girl definitely had her own mind! When I was not looking at J, I seemed to be either drained out from all the crying or completely numb emotionally (but still crying, is that possible?) but each time I looked at her, I couldn't help but smile. She was my daughter! I was now a mom! for those few precious moments (when we were not discussing DS, or tests, prognosis, or practicalities) life couldn't have been better.....I feel guilty now that those moments didn't last longer. every now and then someone would enter the room to check on J or me, or both. Or the phone calls would start....or something else would come up. Nevertheless, I am glad that I did get to experience those few precious moments.....(and it is reassuring to know that despite all the stress, I was capable of experiencing them, that surely is a good sign, is it not?).

My mother had arrived early in the day with home cooked breakfast, and relieved P (my husband) so that he could freshen up and get changed at home before the consultant neonatologist arrived later that day. I was to find out later on that he had gone to his office instead (which was in the same building as my ward) and spoken to his supervisor-broken down while sharing the news with him; he had then called his parents, siblings, of his cousins and also my dear friend AL who had repeatedly called him and me and left worried voice mails. Each of these people had known P to be a happy-go-lucky man, ever the optimist, who stood tall no matter what the situation was, and for them to hear him sounding so low was hard to digest. While my friend, who is also a psychologist, knew very well what DS was and what the implications were, his family on the other hand had no clue. So P had to not only share the news, but had to go on to explain what it meant, what the future might hold etc and also deal with the denial that came his way in response. And as we had not received confirmation regarding the diagnosis, everyone he reached out to in search of support seemed to disregardthe gravity of the situation.
Meanwhile, back in the ward, my mother told me that she had telephoned my dad early that morning and as expected, he apparently did not bat an eyelid. She had also told my brother (who is much younger than me), and said that he was shocked but had quickly recovered and consoled my mother. I spoke to my father over the phone, shedding more tears than ever before and listened to his calm, soothing voice tell me that J was our little girl, that she would be loved by all no matter what. My brother, who by then had searched the internet for information on DS, called me and in his own reassuring way told me gently that J was no different to him than any other child I might have given birth to. Here was my little brother consoling me...and consoling my parents (as I was to later find out), growing up suddenly to shoulder this new responsibility of being a family counselor....
At that point, not knowing what the reaction of P's family was, I was thanking God that all of J's 'significant others' were taking the news in their stride, and I couldn't help but think to myself that within 48 hours, J had managed to bring us all so close to each other.

These thoughts were shattered soon after lunch time when P returned, and handed me the phone saying his parents wanted to talk to me. I only managed to say "hello?" when the barrage of accusations started....my MIL was shouting at me, telling me that I was bearing the brunt of my own decisions, that had I listened to the elders and carried out the prescribed religious rituals, and visited a particular temple in Mysore, my child would have been 'normal'. I blanked out completely, and all I remember is her saying "we told you....but...you didn't listen". After a while, for not having anything better to say, I simply said "I am sorry" and passed the phone back to my husband. 17 months on, even today, I chide myself. what was I apologising for? I was NOT sorry for having J (not then, and not now, and I'm pretty sure, NEVER in the future). That was the only time I spoke to my MIL (or anyone from P's family) after J's birth untill 2 months later when P's mom visited us in order to 'help' us out.

Strangely, despite the hostile conversation wearing me out, there were no more tears. I seemed to zone into an oneroid state, and I came to life only when I held my daughter. P, by then had brought me lots of printouts from downs' ed and other online sites. But I could not focus on anything. I was able to finally get up from a supine position, and take a shower, but that did nothing to refresh me. I wanted to know the result of the bood test, so that we could just "get on with life".

By mid-noon, the consultant and the SpR came to our room, and asked us to take a seat to hear the news. P and I sat down clutching each others' hand....bracing ourselves to hear what we already knew deep down in our hearts. Very gently, Dr.G broke the confirmatory news, clarifying that it was trisomy 21 (not mosaic). She allowed us to gather this news (I remember P and I shedding quiet tears, my mother turning towards the wall, her shoulders shuddering slightly....and I knew she was crying...while J slept peacefully in her glass crib). I asked my mother to help me carry J, and there we sat, P, J and I, huddling close to each other, while Dr.G went over the protocol of what was to follow. They had notified the Down's team at N'ham, they had spoken to the paediatric cardiologist for an echo asap, and made other arrangements for a few more blood tests. She mentioned that she would have ordinarily gone on to explain more about DS, but knowing P and my professional backkground, she was hesitant to do so. We told her to treat us like 'blank slates' and tell us whatever she had in mind. She explained briefly about the resources available, and suggested that she wait for one of the members of the downs' clinic to work with us. Then, cautiously, Dr. G went on to mention that all reactions were normal- while grief was inevitable, denial and numbness were not uncommon too. And many parents often have the option of giving the child up for adoption, and if we did do that no body would judge us. P and I looked up at her with shocked expressions- the thought of giving J up had never occurred to us, but we said nothing. We thanked the doctors, and once they left, there seemed to be a more calm-albeit sad- atmosphere prevailing in the room. Now we knew. For sure. As I held J, and saw my beautiful daughter with the peaches-and-cream complexion, I could not help but wonder "how?", "why?", "why us?".....without emotion, I voiced these questions, and all my mother said was "why not us?".
As it was time for my mother to leave, we quickly made a couple of phone calls (to my dad, brother, and a cousin who lived close by). AC came to pick my mother up, he took one look at us, and knew that it was all confirmed....but did not say anything. He spoke to J.....P and me, and whisked my mother away. As we settled down for another night, we felt spent....I asked P to put J beside me before he went to bed, and as the 3 of us lay down, I could only feel a fierce sense of protectiveness....this was my family, and no one in the world could tear us apart. P and I talked late into the night....we wondered aloud, had she not had DS, if all were 'well' so to speak, what was the guarantee that calamity would not strike in the future? which child came into this world with the assurance that he or she would be disease free, accident free? There were no guarantees....none what so ever. Only a few hours earlier, the alarm in the post-natal ward had gone off, and over the shrill ring of the alarm, we heard the helpless cry of a woman....and then we heard her weeping uncontrollably saying repeatedly "why God...why....? my baby...."
We found out that her newborn baby had died (not sure how)....while our hearts went out to the lady and her family, we were selfishly thanking our stars that J was alive and well.

We were thankful that the diagnosis was made within 24 hours....we were glad that we were in the hands of people who seemed to know what they were doing.
I did not know about the various medical conditions associated with DS, and as P listed them out, I could feel my eyes brimming with tears....how much more was in store? Why can't my daughter be given a clean bill of health?
There we were, oscillating between 'thanking our stars' to asking "why? how much more?"
As P drifted off to sleep, I lay there, wide awake, holding my daughter close to me (against the advise of the ward staff, who kept insisting that she would be more comfortable in her crib).
I couldn't help but go over the sequence of events in the last 48 hours.....again and again. And although I accepted the fact that J had DS, each time I looked at her, I could not believe that there was an extra chromosome in each cell of her body. And although I know that I may never get an answer, I couldn't help but ask "how did this happen?".....

D-day

As we headed to the hospital, I silently said my prayers while simultaneously telling my unborn daughter that I couldn't wait to see her and that no matter what we would always love her always and forever.....I had told her this from the day I got to know I was pregnant and I couldn't wait to hold her in my arms and say this to her in person.
It was a planned C-section, and I was second on the list. Just before 10 am on D day, I walked to the OT and I remember thinking that the room didn't look all that different from my GP's room at the surgery! My husband was asked to scrub in, and there he was looking mildly uncomfortable in the sterile settings. As they gave me the spinal anesthesia, I remember my midwife politely telling me that I was bruising her arm....quickly apologising, I waited for the numbness to set in. In walked my gynaecologist and asked if I was ready (hell yes!). within a few moments I head the sound of the suctioning of fluid.....any moment now! I squeezed my husbands hand, asking him for the 100th time "is she out yet?". "Where did they say the head was at the last scan" asked my Gynaec. (uhm hello? what? WHAT?) I panicked...."she was head down" I said. "Looks like she turned" was the response I got. and then within seconds my screaming little baby came into this world, weeing all over me as she screamed her lungs out. There she was....all grubby and wailing. "look...she's sticking her tongue out at you" said my husband....and all I remember saying was "hello baby K" (our pet name for her). "Is she all right?" I anxiously asked. "Don't worry, she looks a bit puffed up and squashed as she hardly had any space due to your fibroids" said the gynaec. She was placed into my husbands arms and for the first time in my life, I saw the look of sheer joy and unbridled happiness on his face. And for the first time, I heard my husband (who hates being photographed) request the midwife to take a picture of him holding our little girl! A couple of pictures later, the midwife whisked the baby away for the usual checks, while I tried to settle back and wait to get sutured.
When I first saw her, I remember wondering if she was alright...something didn't seem quite right. But then, ever the pessimist, I was bound to feel that way...always fearing the worst. One look at my husband's joyous face put all fears to rest. There was a lot of talk of how much hair my baby had....she had long dark tresses (and equally long finger nails)...amidst all this banter, I hardly paid attention to anything, I just wanted it all to be over...soon. I wanted to hold my little girl.
I asked the midwife to take the baby to my mother who was patiently waiting outside. as they wheeled me away into recovery, I listened to my husband chatting with the anesthetist....small world indeed, as it turned out that they were from the same med school in India, and that she was a couple of years his senior. As they swapped stories and tried to recall people whom they may both know, all I recall was this urgent need to hold my baby. This was the first time in 9 months that she was away from me!
As they waited for my BP to stabilise, the midwife asked if I wanted to do skin-to-skin, and I said yes. As she put my baby on me, I remember the warmth of her tiny body, the softness of her skin....and her urgent rooting reflex. As she was swaddled into the green hospital blanket and placed next to me, my husband took one picture after another in his brand new iPhone....and quickly sent it to my Dad and brother and several other friends and relatives. We had prepared a short email/text announcing the arrival of our little girl. the text went through...but sadly, the content of the email had to be changed and it was sent several days after our daughter was born.
On the way back to the ward, with my baby safely tucked in beside me, I met my mother who was proudly standing outside the recovery room. She gave me a big hug, congratulating me, and saying how happy she was to become a grandmom. Back at the ward, I realised that there seemed to be a lot of interest in us. A paediatric SHO arrived and took a good look at our daughter. Then the midwife returned for more checks. Then followed a paediatric registrar. It didn't strike me as anything more than routine. But the SpR's words were meant to stay with me for a long time to come. She asked "so how was your pregnancy?" and I remember thinking that it was a bit redundant, given that the pregnancy was now over. She then looked at my baby."Oh Hello there! what a beautiful little girl...and so much hair!" she said in a chirpy tone. "A bit difficult as I had painful fibroids, had red degenration, but nothing unbearable" said I. "Did you have all your scans, tests etc?" she asked, cuddling my little girl. "Yes, I did. I even had the NT scan....and more routine checks than others as they were monitoring my fibroids" I said. "Does your daughter resemble anyone?" she asked. "I really can't tell......" I replied.
"Well let's see....." (she now had my daughter in her arms) "She has a lovely round head with lots of hair....she has beautiful almond shaped eyes...." she droned. "NO!....No....No...." I said realising immediately what she was implying. My husband squeezed my hand...."wait...don't worry...wait..." he said. I could see my mother steeling herself. I felt the SHO's hands were on my leg, trying to soothe me. "She has a lovely little neck....short stumpy fingers....a beautiful crease in her palms....her toes seem to be spaced slightly apart" the SpR went on, seemingly not registering my response. "No...please, No...." I cried. "Do you know what I am trying to say?" the Chirpy SpR asked. "Down's?" I asked...tears now flowing down my cheeks. "Just to be sure, we will do a blood test. Its just that she doesn't resemble you or dad, and she does have slanting eyes. Her tone seems to be a bit poor, so let's do the test....is that alright?" she said. No it is NOT alright....how can this be? they sad they saw the nasal bridge on the NT scan. all the tests were normal. I am only 31. how can my baby have down's? but all I said was "yes, its ok...". I then turned to my husband, who was looking shell shocked, and asked him to go with the doctors. I didn't want my baby to feel alone....not so soon after birth. I was shedding tears that didn't seem to stop....crying my heart out. The midwife came in and gave me a hug. in the background I could hear a piercing scream as they pricked my daughter's foot ("my little fighter" I thought). The midwife explained that she called the doctors as during the routine check, she felt my baby's palate was a bit arched. as she knew no better, she thought it was best to get it sorted. All along she thought the diagnosis was would be 'cleft palate'....not knowing that she had unvieled something totally different. I thanked her for picking up on what she thought was an anomaly. The kind midwife arranged for us to be moved into a private rooom, where we could deal with this shock away from the eyes of inquisitive people. I felt so numb....and all I wanted was my daughter to be placed beside me again. As my husband walked in with our little girl, I looked at him, and saw such sadness in his eyes. only an hour earlier, he seemed to be giddy with joy, and now I could see our little world falling apart. As my daughter was placed beside me again, I turned to her (as much as my half numb body would allow) and told her what I always did, every single day, for the past 9 months. "we love you baby K, and we will always love you no matter what, always and forever". I was crying....and so was my baby. As I tried to soothe her, my husband and mother tried to calm me down. "Don't worry, she's a bit puffy, so the eyes may look like they have a slant....just pray and keep the faith. Even if she has Down's, nothing changes, she's always our little girl" said my mother. My husband was now in physicain mode and he was checking our little girl with a medical eye. "she doesn't have a single palmar crease, the SpR doesn't know what she was saying...she just rattled all the signs of down's. yes her eyes look different, but she doesn't have the classic features. let's wait for the result of the blood test" he said. As I quietly sobbed holding on to our little girl, I knew that we were just praying for time. Objectively speaking, she did look like she had Down's Syndrome. I just could not understand how, or why, or how it was not picked up in my antenatal checks. As I saw my baby sleeping peacefully, the realisation dawned that we still had not named her. We had a whole list of names, derivatives of the 5 natural elements, and we had narrowed it down to 4-5 names. As I looked out of the window, I saw that it was begining to drizzle, and the name dawned on me. we had to name her after water...."J" said I. can we name her "J" after the sacred hindu river? "J" said my husband, smiling gently at the baby and me..."We have our little J". I looked at my mother. she looked overwhelmed, but was trying to stay calm. "of course. J is the perfect name" she said.

The midwife came and went....trying to get me to nurse the baby. she assured me that colostrum was highly nourshing, even if it was a few ml. As my baby tried to suckle me, I leaned against the pillows trying to relax....and trying not to cry. every few minutes someone or the other from the nursing staff would come into our room, checking on us. they bent the rules and decided to allow my husband to spend the night in the hospital with me. I was to realise much later that they were observing me carefully to see if I was showing any signs of rejecting the baby. The phones rang incessantly....but I was in no state to speak with anyone. I turned my mobile off. I asked my mother not to mention anything to my dad just as yet, as it would be quite late in India, and he was all on his own....the last thing I needed was to upset dad at this late hour. My husband went out for a bit to make a few phone calls. When he came back, I saw that his eyes were red-rimmed. seeing him brought on a fresh round of tears. as he held me and rocked me gently, he tried to reassure me that everything was going to be alright. from the corner of my eye, I could see that my mother had quietly taken out her rosary, and had started chanting.....In retrospect, I'm not sure what we were praying for.

We had earlier sent a text to almost everyone on our contact list that "mother and baby" were doing well. as the phones rang, we realised that our close friends need to know, especially those in nottingham. two of our friends had recently had babies, and we saw several missed calls from them. my husband called his friend AC and explained the situation to him. he came in immediately (bringing with him J's first toy a wind up winnie-the-pooh" and a beautiful sleepsuit). This was the beginning of a friendship that in its changed way would be forged forever. AC was a calming presence. I could see that he was shaken, but he was trying to be brave and neutral. Being the hands-on sort of person, he quickly tried to deal with practical aspects of the situation. he offered to take my mother home and bring her in early in the morning. he spent a few minutes with us, and left for the day with my mother. I was a bit worried about my mother staying on her own in a new place (she had arrived only a few days earlier, and it was her first visit to nottingham). but as we had more pressing worries to deal with, i said goodbye to her, and went back into my numb state of feeling nothing. the tears were spent. I was tired. I felt a deep hollow in the pit of my stomach, like i was going to be sick, but nothing happened. As my husband closed the door and returned to my bedside, for the very first time, he, J and me were left alone.....we were now family. whatever the blood test may say, she was our daughter....we vowed to stay by her side forever and love her unconditionally. I can never forget the image of my husband breaking down that night....as he collapsed into my arms, we both held each other and wept for our daughter, for the demise of the perfect world we had conjured up, for ourselves. sleep never came....and at some point that night we switched from being grieving parents into two robots in a state of 'autopilot' that saw us through not just the next 6 days in hospital, but also the next 30 days which can only be described as chaos galore.