I loved him so much that I begged him to go...
The Story of Charu Aggarwal
Based in New Delhi, India
Written by Mallika Bhatia
Me and Rahul got married in 2009 after patiently waiting on convincing my parents for a long time. We both wanted to wait till both sides of the parents agreed. It was purely Rahul's trust and effort that finally won them over. For the next few years we were in bliss and we decided to expand our happiness by creating a new life together. I got pregnant in 2013. My pregnancy was textbook perfect. I was hale and hearty, full of energy throughout the pregnancy, no morning sickness, no nausea, nothing, just a happy kicking baby inside me. All the tests and ultrasounds were perfect and we, along with our extended families were really looking forward to the new phase of our lives.
Nine months later, my labor pains started just a day before the due-date given by the doctor. After 24 hours, we had a healthy looking, pink baby in our arms. It was a boy who weighed 3.8 kilograms, a healthy birth weight by all standards. We named him Rushil, the charming one. Celebrations began soon after his birth. It was almost midnight so my mother decided to stay at the hospital. It would give my husband, Rahul some much needed rest. It had been a long day for him too, he had been in the labor room throughout. As most babies do, Rushil had the colostrum, the first feed of mother's milk, and slept blissfully for the next few hours.
We had to wake him up to feed him again. He had a little milk and vomited out something green a couple of times. The nurse told us that it was just acid reflux, something very normal for newborns. She took him to the NICU (Neonatal ICU) to clean up his stomach and for general observation till he was comfortable. After a couple of hours, he was brought to me again as they had cleaned his stomach and he seemed absolutely calm. I breastfed him again only to see him vomit something green one more time. The doctor and the nurses told me again that it was all normal and took him to the NICU. We were also advised to stay in the hospital for one more day for observation.
I was asked to pump milk and called in NICU for skin-to-skin and direct feed while Rushil had started exploring his new surroundings. Rahul kept peeping in NICU to see if Rushil was sleeping or awake. All seemed normal until on one such trip to NICU, Rahul sensed something wasn't right. It was late evening and the NICU incharge had been called back from home. She informed Rahul to wait back in the room and that she would speak to us soon. A very anxious half an hour later, she walked into our room and informed us that there was indeed something wrong with our baby. They did not know what it was yet but knew that he was losing blood as he was becoming pale. It could have been in the brain, they had suspected. The doctors had to find the source of the blood leak in order to fix it. She told us that she was consulting her colleagues and seniors even in other hospitals. She said she was trying to figure out the next steps and needed our trust and patience.
At around 10.30 p.m. that night, his tiny frame was being taken for an ultrasound followed by a CT scan. All the reports came out normal. Our tiny baby was being pricked every few hours to check his levels of haemoglobin. It kept dropping. He was being pricked for some test or the other and that troubled us parents to no end. The pediatrician told us to rest while she tested Rushil for possible issues throughout the night and yet, not once did we feel that she left our side. By dawn, Rushil’s stomach had started distending, i.e, it had swollen up and he was now in pain if someone tried even to touch his stomach. Our doctor had contacted the pediatric surgeon and requested him to come and see our child. The surgeon said that if the child had passed urine and meconium then all should be well. He did come after insistence.
The surgeon had one look at Rushil and said that he would have to open him up. We now decided to inform both of our parents about the happenings who rushed to the hospital to be with us. They were going to do an exploratory surgery in order to identify what the issue was. Our son was just 3 days old when he had his first surgery. We were obviously nervous wrecks. He was so tiny, so pale and so fragile. We kept hoping and praying that he would be alright during the surgery and the doctors managed to find out what the issue was and were able to fix it. We just wanted to go home with our little baby. Tears and tension went hand in hand.
A few hours later, the surgeon walked out of the operation theatre with a small bowl in his hand. It contained a tiny sausage like thing. The doctor then informed us that our son had a very rare congenital deformity called the Apple peel deformity. Usually there are a web of blood vessels supplying blood to the intestines, in our case, our son had only one such nerve but still his small intestine were fully formed. The only blood vessel supplying blood had got twisted and the blood supply to intestine was hampered. The blood had started flowing inside the intestine turning it gangrenous. More than 70% of his small intestine had to be removed, though the colon, which helps the body absorb liquids was intact. That was the only positive outcome of the surgery. The surgeon informed us that once Rushil recovers from the surgery, we would assess if he could have mother’s milk or would he require special pre-digested formula. He also told us that Rushil might require special pre-digested food throughout his life. His body was not capable of digesting anything on it's own.
We did not know if we should be happy about the doctors finding the source or sad about our child never eating. That evening was when the reality of it hit us, we knew we would never have a normal healthy child. He would have tubes feeding him throughout his life, he would be a regular visitor at the hospital and God knows what other complications along with it. Our neonatologist kept giving us hope. She said let's wait and see how he recovers. She was doing a lot of research of her own to try and find solutions that might work. She was looking into transplants and other options. She also insisted and convinced the surgeon with her findings that no formula can replace the goodness of mother’s milk and that it will in fact help in recovery.
I had been discharged but me and Rahul still spent the whole day in the hospital, waiting for our son to recover from his surgery. Rushil stayed in NICU. We visited him during the day and spent the rest of the time assessing and discussing his condition with the doctors. After around a week, when his stitches had healed and the doctors thought it was safe, we tried to feed him breast milk again. He took the feed hungrily but unfortunately his stomach bloated almost instantly after taking the feed. The surgeon rushed back to check on him. He made an incision on the tiny stomach and the same green liquid/bile started coming out of it, following this the complications just kept increasing every single day. Again a series of tests were conducted which lead us nowhere. The surgeon suspected that his internal stitches had given away and wanted to open Rushil up again but we were vary of it. He was just 16 days old. It was all happening too fast and it was all very difficult to process. Just a week and half before we were celebrating this new life and here we were, a few days later not knowing what to do with it.
We took second and third and a fourth opinion. By now we were told by everyone to stop hoping for his recovery. We did not want our child to turn into a vegetable, we did not want him to suffer so much just for our egocentric love. We could not focus on just keeping him alive when he did not have a life worth living. We knew by then that he would not grow, he would need support and medical intervention all his life and yet he would not be leading a healthy life.
What did we want the end result to be? What were we looking at in the long run? Did a little baby deserve to go through so much physical pain and so many surgeries when we were not sure what would come out of it? We wanted our baby, we wanted him to be healthy and happy but at what cost? There were so many questions in our heads, so many dilemmas. What was the right call to make??
Our answer came to us when the surgeon we took the second opinion from explained that his only aim was to keep Rushil alive, if he eats all his life or not was secondary to him. Me and Rahul instantly knew that we could not make such a selfish decision.
That evening we went to our surgeon's residence to speak to him. He was rather nervous when we walked in. We sat calmly and told him that our prime objective was to relieve Rushil of his pain. If the second surgery would help him then we were ready for it. We told him that we trusted his judgement and wanted him to know that if he was faced with a difficult choice during surgery, then we would trust the choice he would make. We conveyed our faith and also our unfortunate decision about not wanting our child to turn into a vegetable.
During the second surgery, the doctor found out that it’s not just the stitches but most of the small intestine that had given away. There was almost nothing left and his stomach had just become an open pit. Nothing was left, neither his intestine nor any hope. The doctor stitched back whatever little was left and we were told that all we could do now was palliative care, just to make sure that his death was as pain-free as possible.
We had to accept that he was dying, there was no way of saving him. It was extremely painful to watch him with all those tubes and wires and yet it was the tubes and wires that made acceptance a bit easier for us. He had an IV keeping him as nourished as possible. The doctors and nurses were constantly there with him. As ironic as it sounds, he had so many mothers in the nurses taking care of him, hoping and praying with us. They seemed to be taking care of him like they would do for their own babies. Sometimes we would all cry together. He had become like a family to all of them and they would take turns to hold him and spend time with him in our absence.
Rushil's condition was getting worst and it had actually started affecting the staff emotionally. This had been a forty-day long journey for all of us. 40 days that taught a lot of us much more than we wanted to learn in this lifetime.
Rahul and me together decided to take our baby home. We wanted him to come home, even if it was for a few hours. No one could predict when he would eventually go but everyone agreed that he deserved to be home and loved. The pipes weren't helping. Our wish of taking our new born home was finally being fulfilled. The doctor spoke to us and told us how difficult it was going to be at home, emotionally and physically. Everything would be erratic, unpredictable and draining, both for us and for him, she had said. She tried to prepare us by giving us as much information as possible. She told us that he would slowly starve, he might cry a lot because he would always be hungry and his throat would be dry. One by one his organs would start failing, in what order could not be ascertained and then finally he would literally starve to death.
The next few days were the longest and the shortest days of our lives. We had to make the most of the time we had with Rushil. We would dress him up and have long conversations. He would just look at us with pure love in his eyes. Sometimes he would smile back and respond in his own sweet little baby ways. He would also constantly be hungry and dehydrated. There was nothing we could do about it, just hold his little body while he wailed. We hoped that our love was enough. Till date we aren't sure if it was! He would get tired and sleep. We had to feed him every 20 minutes, just to keep his throat from drying. The milk would go in through the mouth and come straight out from the bottom, almost life pouring something through a pipe. This cycle was repeated every 20 minutes for the next few days. He required 24 hours care and feed and I obviously did not have that much milk supply so we topped it up with formula. Slowly his liver started giving away, he developed jaundice.
Now our conversations with him changed. We started telling him that we were truly sorry but there was nothing we could do for him. We started telling him to go.... We told him repeatedly to not elongate his suffering and, selfishly even ours. We would kiss him with tears in our eyes, hold his little body as close to us as possible. His body did not have enough energy to move on its own, not even a hand or a finger and yet he would look at us with pure love and gave us the sweetest smiles. Like he wanted us to experience the pure bliss of love without saying a word. His schedule started getting more and more erratic, either he would not sleep or he would not wake up for hours. Sometimes he would sleep for 12 hours straight. The doctor told us that this meant his end was near. We would keep checking if he was breathing, that was all we could do. We were still singing to him, dressing him up and enjoying the little time we had together as a family.
On one Sunday afternoon his breathing became very labored. We called the doctor who told us that it could be a fluid buildup in his lungs. She said she would try to arrange an instrument that could help him breathe better at home. Rahul was holding our tiny baby and standing in the balcony. I came out of the shower and overheard a teary eyed, broken Rahul speaking to our son, begging him to go. I went close to them and held them both. Our little family was so perfect and yet so imperfect right now. We all loved each other and we were all so helpless. We wanted our son but we kept begging him to go away from us. It was all too painful, all too complex. I took Rushil in my arms where he took three or four labored breaths and then stopped breathing completely.
Our son had decided to listen to us, he was gone. He had left us and this world that could do nothing for him. Just like that Rushil was no more. As we held his lifeless body, we didn't want to believe that the moment we were dreading was finally here. We decided to rush to the hospital, where Rushil was finally declared dead by our doctor. It was like he had to say goodbye to his doctor as well.
Our charming one had charmed his way into so many hearts. There were so many wet eyes that day. He had had a short life and yet in his short life, he gave so much. He made us parents, he got us face-to-face with the different layers of love, he made us go through our worst fears and helped us realise that life still goes on. He made us eternally grateful.
Rushil was truly gone. He came and went so quickly. Both me and Rahul had a lot of emotions to deal with. We were sad, angry, helpless and relieved. There was so much we had lost that it seemed natural to us to even lose ourselves. It took us more than a year to get used to the emotional pain, I wouldn't say get over because how can a parent ever get over their child! We had to relearn how to live, this time with a constant emotional pain. We grieved, we cried, we healed and became mentally strong. We were sure that we only wanted to focus on ourselves. A lot of people around us wanted us to behave like our child was never born, they got uncomfortable when we talked about Rushil and kept telling us to get over him and try for another child, almost like our baby was replaceable. We had support yet in many ways we were all alone.
After about one and half years we both decided to go back to the same doctors and talk about having a second child. The doctors had been so supportive and transparent that we could only trust them now. Soon we were pregnant with our second one. This pregnancy was completely the opposite of my first; I was anxious and sick all the time. I had acidity, vomiting, nausea...the works. We were doing several extra detailed tests and our pregnancy was being monitored by a genetic expert this time. Everyday of the pregnancy I had to tell myself that we will face whatever happens. Somedays I told myself that we can't be a second time unlucky. I had medical science backing me up because even though the condition Rushil had was genetic, it could not be predicted and rarely did the same set of parents have the same case repeated.
Two years and some months later, me and Rahul were in the same hospital with almost the same staff going through labor. Aseem was born the next day. He looked so much like his elder brother when he was born. He is 3 years old now and is the naughtiest child we have ever come across. He seems to be here to receive everything that Rushil gave us. All our love, attention and blessings. Everyday we thank our Rusha for coming back to us. Everyday we count our blessings and live with gratitude.
We decided to share our story because we wanted the world to know that there is pain but there is always hope, it just depends on what we focus on. We want to thank the medical staff who took care of us and made us trust in humanity. We want to thank all our family and friends for being a part of our journey in their own ways and helping us heal. We want to thank you for reading and humbly hope that our story will help you or your loved one in some way. Like they said, a single thread of hope is still stronger than an entire rope of doubts.
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