Krisha
[7-4-2010 to 4-7-2010]
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.
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