Life After Krisha

It is already two weeks since Krisha left us - 13th day today when according to our customs the mourning period is over and we should get on with our lives. It feels like a lifetime and at times just yesterday.


Since Krisha has been gone, we are spending more time with Kaira. For me it seems like I am getting re-acquainted with my daughter. Past 3 months with going back and forth to the hospital and then having Krisha home I did not realise that my attention had been so slanted.  Initially I was actually nervous and insecure about managing Kaira, not sure if I understood her cues, my mom and Deepak seemed so much more in tune with her.  Strangely even though Krisha was so delicate I never hesitated in handling her, whether she was crying, had to be fed when she did not want to, give her medications, bath etc. I think God really does give you the strength to cope with the challenges he has set for you. 

We call this the double decker picture - Kaira really wanted me to pick her up while i was with Krisha

Since December that we knew about Krishas condition and since she has been born,  our focus was so clear. Our life was in a vacuum and the outside world did not matter. We were busy and content within the family.With both babies home together there was a non stop flurry of activity all day and for me at night too. I had actually mastered the art of feeding them both with the bottle simultaneously so that i did not need to wake up anyone else - God knows how i did that !  All of a sudden it feels empty and having a single child seems to be a cakewalk. For a couple of days I was lost, not knowing how to occupy myself. All of a sudden we are able to get back to things that we normally would do but they still seem so irrelevant.


When something like this happens, you expect the world to stop but it doesn't. It amazes and saddens  me that  life goes on - u still feel hungry, chit chat with people, bills need to be paid, work continues and you can even manage to smile, especially with a baby doll like Kaira with you.


Kaira is our strength and saviour and I am so thankful to God for her. I feel she supported us a lot in her own way by being such a cooperative, easy and happy child.  Since Krisha used to be in my arms most of the time she was home, everyone noticed the forlorn stare Kaira used to give me, and follow me around the room, as if she was telling me that she needed me too. Now she seems to be on a fast track to take double the love and care that we have to offer her. She is doing new things everyday, smiling everyone silly, playing with toys, gurgling and much more.



I know that Krisha will be missed by us everyday of our lives, I wish we could devote something more substantial for her. I feel like getting away, closing my eyes and willing back each and every moment we spent with her. 

Although I will ever stop wishing that I could have raised my twin girls together and there will always be a tiny niggling in the back of mind why it could not have been easier for us, I am still grateful for having Krisha and being able to do what we could do for her. I am thankful to all our family and friends who have been so amazingly supportive and caring towards us and given us more than we could have asked for. I am thankful for  having an amazing husband who has been a pillar of strength and righteousness. So lots to be thankful for and positive in life and Krisha will continue to be our little baby angel, with us every step of the way.

HLHS surgery - biggest decision of our lives

Hypo-plastic Left Heart Syndrome - a complicated term when you hear about it for the first time and means nothing to you. When Krisha was diagnosed with it, I actually wrote it down to be able to repeat it later. Today these four words are so familiar, bitter truth of our lives and have taken the most precious gift away from us.

What are the odds of your first baby being diagnosed with a rare heart defect that affects 4 in 10000 babies - for which there is no clear cause or explanation, a condition that is 100% fatal unless surgically treated. For HLHS cases there are three options for parents: termination of pregnancy if detected in-utero, compassionate care which means doing nothing and taking the baby home and third to go in for a three stage surgery treatment. 


The surgery option is not at all as simple as it sounds. The treatment has just been there for the last 30 odd years and is not a cure. The three surgeries done at birth, 6 months and 2-3 years offer their own set of challenges at every stage. Children with HLHS are on medication throughout their lives. The lack of oxygen in the blood can lead to neurological and developmental issues and added to that are the side effects of having an open heart surgery at such a young age. So in all it is a non stop barrage of challenges and fears.

All this information scared me ... scared me a lot. Instinctively of course you want to do the right thing and give your child the best chance at life. But then there is the big question of the quality of life for the child. How do you decide what is acceptable? If we decided to go ahead with the surgeries we had to be prepared for whatever happened and there was no looking back. I had another baby to look after whose care should also not suffer. At the same time I was petrified about how our lives wold pan out raising her and if we were doing right by her if she was not able to lead an independent, healthy active life. What kind of life would she have, would she be able to look after herself if we were not there, would she get married, would she go to normal school, be able to do all the activities that children did? All these questions were running through my mind over and over, however no answers followed. As the head of NICU pointed out after Krishas birth, a major concern of parents of children with special needs, if she was one, is on how they are perceived socially. The mental make up is still not as mature in Asia as compared to USA or Europe. We just wanted to ensure that whetver we decided was for Krishas good. 


On the other hand if we did not go in for surgery  wouldn't we be unfair in not even giving her a chance at life? Who were we to decide what life was worth living? Deepak has always been the more structured and logical  thinker between us. If the doctor assessed that her case was operable and surgery was an option for her, we would do whatever was in our power to support her in that.  Rest whatever happened would be her destiny and ours. As I read somewhere recently "Never give up on something that you can't go a day without thinking about." 

When Krisha was born she looked so healthy and normal that nobody could make out she was suffering from a fatal condition. HLHS babies are fine in the mothers womb but as soon as they are born the clock starts ticking. Krisha was breathing totally on her own and her right ventricle was quite strong, making her ready for surgery, the final decision was ours. I remember having such a sinking feeling in my stomach for the one and a half days immediately after the delivery. We were shutting between the nursery where Kaira was and NICU where Krisha was with a clock ticking on our heads. The surgeon gave us a deadling on the second day that if surgery was to be done there was no time to loose. Being a twin, even though she was full term Krisha weighed 2.24 kgs which made the surgery quite delicate.

After consulting with the consultant at the NICU, the surgeon, Head of Pediatric Cardiology, our immediate family, we decided to go ahead with the surgery. Once this was done and communicated to the Doctors it was as if a weight was lifted off our shoulders. There was anxiety about what was to come but I felt that we had the strength to face whatever was destined for us. 


Looking back now I am so happy about the decision we made. I don't think having been through everything I am still in any position to advise or judge the decision of others but I do know whatever we decided seems so right and I would do it all over again. I know that things did not turn out the way we would have liked but having been with Krisha for whatever time we had and at least giving her the opportunity to make a life for herself seems right. 


I do feel for all the pain she went through and seeing her in the hospital there were times when I questioned myself if we had been fair to put her through it. However once she was home it was all forgotten by all  of us and the joy and happiness of being with each other dimmed the suffering. She really seemed to flourish being with her family. In the long run it would surely have been worth it. Maybe God had meant for her to come to us for this much time for a purpose .. maybe we will understand some day.

Saying goodbye to Krisha

I  Love you Krisha Baby!

Krisha lost her battle to HLHS on Sunday 4^th July. As DK pointed out she was born on 07/04 and left us on the mirror image of that date - 04/07. It was very sudden. One minute she was in her Nanus arms and the next she was turning pale. I quickly started giving her CPR and called the ambulance. It all lasted only a couple of minutes before the medics took her from me. She was finally pronounced gone after almost two hours. Her surgeons rushed over as well and am sure everyone gave it their best shot to save our tiny little baby girl but God had other plans.

With Krisha in the balcony the day before

The day she passed away was also a bit different. Normally I would sleep in for a bit in the morning after feeding Krisha and hand over Kaira to mom. On that day Krisha made sure she spent time with everyone. She slept in Deepak’s arms in the early morning before I took her and went out in the balcony which she always found calming. She was in my arms and we both dozed off for a while. When I tried to put her down on the bed she wasn’t too happy so I lay down with her face down on my chest – a position she loved. Unlike most days when my mom would be looking after Kaira, I handed Krisha over to her and finally she ended up with my Dad who was carrying her. Having fed her the medication I took Kaira for her massage and put on some baby music for the girls. It was within minutes that I saw her colour change and put her down on the floor to revive her. These images keep coming over and over in my mind and it all seems surreal. The CPR count of 1..2..3…4…5 is still beating in my mind.

When I was learning infant CPR at the hospital before discharge I was thinking to myself that it was just a formality and I would not need to use it. We were aware of how critical she would be in between surgeries but since she had been home her stats looked so good that our hopes were revived. We really felt that ours would be a miracle story and she would survive this ordeal.

I am so happy that God gave us time with her before she left – to really be with her, be a complete family, for her to be with her twin sister Kaira. It is a very big loss for her to have lost her second half and I hope in some way we can make up for it, When she grows up we will be able to tell her about Krisha and what a brave and wonderful sister she had.

Seeing her at the hospital after they had shared the devastating news with us it seemed like she was just sleeping. We spent a couple of hours with her before they took her away and I still could not digest that she wasn’t there with us anymore. I talked and sang to her like I always did. Back home making funeral arrangements for the next day we decided to hold the service at a funeral home. However we had to make an appearance at the coroner’s office before we could bring Krisha back with us. While we waited for 3 hours for our turn it seemed we were not the only ones. Each family there had lost someone special in their life and were waiting to take them back with them.

The day of her burial Krisha looked one of her best ever. She looked so undisturbed and peaceful, her forehead had a calmly glow and a smile played on her lips. She looked alive. It gave me such a sense of peace that finally my baby was actually free from the pain that she had suffered in her life and maybe it was more comfortable and better for her to go this way. Knowing in my heart that we had done all that we could for her, put in our best effort to help her be with us for as long and as comfortably as possible gave me the strength to go through the toughest ordeal of our lives. Even in her passing, she gave her parents the strength and comfort to face the loss and be at peace. I know that she will be with us forever.

At the funeral we were overwhelmed by the support of all those who came. Getting her ready for her last journey from this world we made her wear a night suit, which Kaira had worn as well. She took the blessings of many people with her - a toy, milk bottle, stuff toy, holy blessed bracelets, an outfit and a comb. Her place of burial was very tranquil and green.

I could not believe that I had buried my child. Surely there is no sorrow or experience more painful than this.

Daddy's notes...

Krisha

[7-4-2010 to 4-7-2010]

Three months is a very short period, then again it can be a lifetime. Latter is what it was to our darling Krisha who was with us for just about 90 days as if she came here to escort here twin sister Kaira to us and returned back to the heavens soon after.


The earth shook the day the two sisters were born. Literally. There was a 7.8 Richter earth quake early that morning. It was a long day for us - a blend of mixed feelings. Really excited to have new additions to our family at the same time worried about Krisha's health. We had known whats going to happen this day, months in advance. We had gone over each and every detail as to how first few days would unfold. We knew exactly what to do. At the same time we didn't.

Three months before in December 09, we got to know in the 20-week scan that Krisha is a special child. She would be born with hypo plastic left heart syndrome (HLHS). This meant that one of the pumping chambers of the heart would be under developed thereby impacting the flow of oxygen rich (pink) blood from the lungs to the body. She would survive a few days or weeks after birth before her heart would stop functioning completely. This was a fatal condition unless and intervention would be made via a surgery. This surgery called Norwood surgery (named after the Doctor who developed it 30 years back) is done in 3 stages - at birth, six months and then at 2-5 years of age. Surgery is not curative but just helps in creating a shunt to use the lone ventricle to pump blood into the lungs and body at the same time. Risk of the surgery were many fold - firstly survival from the 1st stage was 70% and secondly even if you did not more than 50% survive all the three stages and hence the pain of multiple surgery and each having similar risks. The lone pump would send low oxygen (blue) blood to the body possibly causing learning or developmental issues later in life. Add to this lack of infrastructure and experience in Singapore. With a handful of blog slides we set out our research work on HLHS on that day in December.

Over the next month or so, we had spoken to doctors in India, Singapore and US. Gone through various website to read on technical and softer side of this surgery and its risks. Not many people had gone ahead with the surgery and opted for comfort care instead. Surprisingly, Singapore offers only one doctor who has experience or confidence in conducting this surgery. After months of our study, we had made up our minds on the next steps or we thought we did.

Come 7th April and we were back to square one. We consulted various doctors immediately after the delivery on Krisha's condition and the next steps. Our priority was very clear -first was the quality of life for the baby and the rest was secondary. Medical science always gives prognosis in percentage terms. It frankly does not matter when it comes to your own child. Either she has it or she doesn't, else why would you expect a rare defect, which happens in 4 in 10,000 births, to happen to your child? Hence a 50% survival rate and a similar likelihood of good quality of life was more than enough for us to take our chances and go ahead with the surgery. We always believed that our job was to make the right decision and God will always show the path one way or the other.

At barely one day old, we transfered Krisha to the hospital where her surgery would be done, splitting our new family between two hospitals - one where Kaira and Karishma were and another were Krisha was. Nursing staff in the hospital knew Krisha's condition and respected the rarity of such occurance. Her low weight made the surgery more complicated. I left her at the operation theater at 9 am for a surgery which was to last around 5-6 hours. It was not before 11 pm when she came back to her ICU room. Its was a very emotional moment to see her back from the surgery and broke down when I heard all the nurses running to her to welcome her back. It was as if the war was over - not realising it was just the battle. Krisha lay in her 2 feet bed surronded by some 5 towers of medicines to keep her alive along with continuos beeps from the monitors to confirm she was. Krisha was to be unconsicious for next few days. Her chest was still left open allowing me to see her heart beating in front of me. I spend the night in the hospital. Not more than 4 hours after the operation, a nurse came running to me to inform that Krisha was critical. Her heart had stopped suddenly. In the next 5 minutes the team of doctors were reviving her by giving here a CPR. In the absence of the chest, doctors were manually massaging her heart to bring her back. After about 20 minutes, Krisha was back again with a support from a Ecmo machine - in simple terms a maching outside the body which bypasses the heart, acts like one and keeps the body alive. It was a medical miracle. Not more many people come back from a heart failure on the 2nd day of life after having gone through a 13 hours of surgery. I really believed that this was the assent from God of our decision and thought it was a matter of time before Krisha would be back home playing with her sister.

Krisha spent next two months in the hospital. We spent our time between the two babies. We would make 1-2 visits each day to meet Krisha and tried to spend 2-4 hours with her. Her condition oscillated much like her pulse. Some days were tough, some good and some great. She showed progress from a near fatal experience to bounce back strongly. We knew that this girl was truly special. Such mental toughness was rare to see. We would wait for days for her to open her eyes but boy what pretty eyes they were. She even learnt how to smile while she was in the hospital. We took each day as it came. She took some time to come off the breathing support system but she showed tremendous improvement immediately after that. By the time she was discharged from the hospital, she had begun to have a few ml of milk orally, she had started making eye contacts and learnt how to attract your attention with her loud cries! We knew it was time to take her home, she needed love and affection along with the daily dose of medicines.

We enjoyed the 3 weeks Krisha was with us at home. It never felt that she was ever in the hospital, as if she had always been with us. She was a darling - she would cuddle up to you and sleep in your arms as if she was a part of your body. She hated being put down and longed for touch always. She talked a lot through her eyes. We completely forgot that this child had a single pump heart until it was time to give her medicines or at night when we would put monitors on her to gauge her pulse and blood oxygen saturation level. We spend some very special moments with her since she came back. Her interaction level was phenomenal and we were all excited about her. The two sisters spent time together, sometimes whispering to each other. We had a special compilation of music and she looked so calm with that. When she slept, she looked like an angel. We just couldn't stop hugging and kissing her. She would always be in someone's arm and we tried never to put her down. She would even sleep in our arms. Things were beginning to look normal - or so we thought. All this happiness was short lived.

On 4th July, days before her third month, Krisha's heart gave away and she breathed her last in Karishma's arms, the very arms that held her for the first time just months ago. While we knew this day could happen anytime, we were caught unawares. It was a shocking and devastating experience for us. We just couldn't understand what and why it happened. Nature obviously is an enigma and no matter how much medical science improves, some questions can never be answered. We are helpless at the end of the day and acceptance is the only way forward.

Krisha was truly blessed to be much loved by all. She had support from family and all our friends. Not a single day it felt we were alone in this battle. Krisha went down fighting and she will remain in our hearts. She has left us with beautiful memories which we will cherish forever. We hope that her soul rests in peace and hopefully one day she comes back to our lap.

Love. Daddy.

Getting to know Krisha

The three weeks that Krisha was with us erased all the painful memories of her two month hospital stay. It is strange how the human psychology makes us forget the pain and look forward. Seeing the baby she finally was in spite of the ordeal she had been through since birth was unbelievable. Even as adults many of us would not have been able to sustain it.

Looking back at her time at home, it is amazing how much we could pack in terms of understanding her, behaviour patterns, likes and dislikes. I think she was on a fast track so that we would not miss out on anything. She needed the human touch and would be most comfortable in someone’s lap. The minute you picked her up she would calm down and blink her beautiful doe shaped eyes languorously at you. This was probably her way of being close to us in the short time that she was with us. 

She loved being out in the open air, if she was crying the best thing to do was take her out in the balcony and she would instantly calm down and close her eyes, enjoying the breeze and fresh air. In the mornings when she woke up I would bring her over to our bed and she would sleep on my chest. It was the best feeling in the world to know that I could give her the comfort and more than that the comfort that she gave me.

She loved sleeping on her stomach. It took us a couple of days to figure it out. She always cried when laid down on her back. Maybe it was the trauma of being in the hospital bed flat on her back for her entire life of 2 months. She did not like sudden temperature changes when we changed her diaper, clothes or took her for a bath. I always took a deep breath before starting, to block put the crying and resolutely singing and talking to her so she would calm down. It worked sometimes. 

Slowly she was beginning to enjoy the things that all babies took for granted. She would ask for milk when she was hungry, giving us the most obvious signal possible, opening her mouth wide and moving her head searching for the bottle. Having her feed from the bottle without spilling or getting through a diaper change without upsetting her were big achievements.

When Krisha was in the hospital one of the nurses had advised us to get music for her as it generally has a soothing effect on babies. I will always be grateful to her for doing that. We compiled music for her, rhymes and lullaby's on my music phone which played by her bedside 24x7. She really seemed to calm down because of it. I have all the rhymes almost memorized by heart and love every song for the comfort it brought my baby. So I think it would be safe to say that Krisha loved music. Now also when we listen to that CD it feels like we are playing her special songs, will cherish it forever.

Although Krisha did not smile so often, mostly while she slept, she had an intense look and could really follow and track very well, even more obviously than Kaira. Her senses seemed very heightened and alert. I was so lucky to be able to capture her smile in this picture. 

Getting through the pregnancy

Being pregnant, knowing that your baby is not healthy is very difficult. Although I had followed the tradition of not informing too many people about my pregnancy in the first trimester by the 20 week scan I had ofcourse shared the news with everyone and even the fact that I was having twins.

I am not a superstitious person by nature but the last 4 months were very difficult - on the one hand we were so excited to be pregnant, and on the other hand peoples well meaning excitement and enquiries about twins really hurt. We ourselves were sometimes scared to voice things out loud. How much should we prepare - do we buy twin things, have a baby shower, how to respond to playful banter about how our life would change with 2 babies etc. etc. At the end of it I had steeled myself to respond with a non committal smile or simply respond as was expected.

At 24 weeks the flutters started progressing into kicks and rumbles and this was surely the best part of being pregnant. I would always try to get DK to come quickly and feel but most of the time they would stop. However by the end of it he managed to capture some amazing movements which he compiled into a video. With two of them it was so difficult to discern who was where ?! I felt like holding my breath and would instinctively touch my stomach to reassure myself that I could feel them!

Maybe it was psychological but I always felt the upper twin more actively which I thought was maybe Gods way of keeping her closer to my heart for as long as possible. Saw a movie the other day where there was a dialogue saying ‘A mother is only as happy as her saddest child’ – am discovering what that means. My thoughts are always ceneterd towards my unwell baby and it already makes me feel guilty that the other one is not getting the attention she deserves.

I started going a lot to the Gurudwara where I could just sit and think of my childrn and pray to God for their well being. Strangely inspite of it all I did not ask God 'Why me’ or how he could do this to us, the only thing I could ask for was to forgive me if I had done anything wrong and to give my family the strength to cope with whatever was in store for us. I still felt lucky in some ways that i got to experience having two babies and the fact that I had a healthy baby as well to look forward to. There are so many worse things that could have happened. So at the end of it I was still grateful and blessed for that. Am sure He had a plan for us.

Although I did try and be positive and enjoy my pregnancy there was always an invisible voice 24x7 reminding me that my baby was sick and may suffer a lot. Overall I think we adjusted and coped with the situation better than I would have imagined, not discounting the turmoil my thoughts and my mind went through every single day.

I really tried my best not to be depressed or disturbed. My prayers changed from asking God to help us make the right decision for our children to giving us all some time together as a family and atleast come home together.

As time for the delivery came closer I was really unsure whether to look forward to the date or dread it. I had no idea what to prepare for.