Written by Ditya’s mother, Pabita

Born as a second child to my parents and growing up with my siblings, I always knew that I wanted to be a mom. Being a PhD student and pregnant, I imagined so many beautiful things in my life: I will graduate, and my daughter will be walking with me during the convocation. I will have the biggest accomplishments of my life together.

At my 24^th week OB exam, everything was perfect. Suddenly in the 26th week, I woke up with some bleeding, and we rushed into emergency. After examination, I was told that I was already 3cm dilated. I stayed in the hospital overnight to see if things would be more stable, but despite multiple treatments, I kept dilating.

Throughout this time, her heartbeat was very strong, which gave me hope that even though she was going to come early, I knew how strong she was. After one week in the hospital, she was born at 0.98 lb, with a big cry out of her lungs. My heart was filled with all kinds of emotions.

After a couple of hours, I went to visit her in the NICU, and I saw her through the small plastic hole of the incubator. I saw my whole world in front of me. She finally made it, even though early. I was so hopeful that she would be fine.

After three days, I held her skin to skin for the first time. Her warmth, fuzzy skin, and small baby cry, her smell, gentle touch around my neck- I was over the moon with joy that’s my girl. Doctors were saying she was growing well. On her 6th day, according to our tradition, I left an empty notebook and a pen so that the god of destiny would visit her during the night to write her fate.

I held her in my arms and kissed her goodnight on Saturday evening. On Sunday morning, we received a call that she was not doing well and may have developed necrotizing enterocolitis. When we reached the hospital, the resident doctor said her condition deteriorated overnight and she might not make it. Our world shattered and both of us (my husband and myself) were crying, rolling on the floor.

The doctors and the nurses worked tirelessly. We stayed in the hospital for the next three days and her condition was stable. X-ray did not show any perforation in her intestine but it was massively inflamed. We were told that she was getting more stable but was extremely ill.

In the next few weeks, her condition improved, and I was again holding her every day. We had a glimpse of hope and after 6 weeks, we were certain that we would take her home with us. I spent 58 days in the hospital not leaving her sight, talking to her through the plastic bed, holding her, singing to her.

She had another round of infection. No active pathogen was found in the blood culture, but she had to be intubated. The X-ray showed there might have been some scar tissue preventing the passing of food. The doctor suggested she might need surgery. Seeing her come this far and physically growing for 8 weeks, we were very hopeful that she would make it.

We waited outside the OR, praying the hardest I could ever do. The surgeon came out after 4 hours and wanted to meet us. We were told that she had less than 10cm of her duodenum and the rest of the small intestine was so damaged that it had formed a small mass. She may or may not recover from the surgery. We felt our world shattered to the ground after so much hope.

This was not the life I imagined for my beloved daughter, and I would have done anything to make her feel less pain.

On May 22, 2023, I held her on my chest to feel her heartbeat, which will stay with me till my last breath. Slowly, I was no longer able to feel it and she took her last breath. I bid farewell to my daughter, who fought bravely for 63 agonizing days.

I hope that she knew how much we loved her and will be loving her till my last breath. Not a single day has passed since then when I have not thought about her. My once vibrant dreams lay shattered, replaced by a profound emptiness that no words can articulate. Returning home with empty arms and unanswerable questions, I found myself adrift in a sea of sorrow, grappling with the magnitude of my loss. Yet, amidst the darkness, a flicker of purpose emerged – a determination to transform my pain into a beacon of hope for others. In honor of my sweet angel daughter, I am embarking on a journey to support the NEC Society, dedicated to building a world without NEC. It is a testament to her enduring legacy, a tribute to the love that transcends time and space.