Meet Nisha Ramasamy, one of our HIE Awareness Ambassadors from San Jose, California!
What is your story and connection with HIE?
Our Brave Warrior
I would like to share an inspiring story about my cute little warrior until her last breath. My lovely brave daughter is named Tvarika Dileeshvar. Born on March 9, 2022, and rested in peace under Angel Hands on March 27, 2022. Last year on August 12, 2021, I found out to be pregnant. We were so happy and excited about it. Later on week 20, we found out that it was our cute little girl inside me rolling and playing around. Everything was normal and happy, she is a very active baby. It’s our usual routine, that myself and my husband used to speak to her daily during bedtime about our entire day spent. She used to listen to those and play with her dad by moving or kicking a lot, more than usual. Everything was good and normal. We hosted our gender reveal party and everybody was happy about it. It all started on March 7, 2022, when we got a call from overseas at midnight that my husband’s father passed away all of a sudden. Things started to deteriorate and I strongly decided to let my husband go overseas to look after his mom since she was there all alone, saddened, shocked and miserable. My husband wasn’t ready to leave me alone here since I was 34 weeks pregnant and just a few more weeks before my due date. But I stayed strong since both myself and the baby were healthy and active and I insisted my husband go back home. Meanwhile, I contacted my brother and his wife to come over here to support and help me during my pregnancy. Everything was decided and my husband left for home to mourn for his Dad. On that day my friends were there until my brother and his wife arrived at night. In the middle of this misery, I wasn’t able to feel my baby, since I was around chaos. The next day March 8, 2022, I was spending some time with my brother and his wife and going out to buy some groceries. On that day I felt my baby was less active than before, however, I felt her. I assumed that because of the previous day’s tiresome work and helping my husband, I could have made her tired from moving. On that note, I slept for the day. Usually, my baby used to be active in the early morning around 4-5 am. But on March 9, 2022, around 4 am I wasn’t able to feel her. I started to panic and had an instinct that something wasn’t right. Immediately I called the labor emergency and told them my baby wasn’t moving around. They said to come over for an ultrasound check. Then I woke up my brother and we rushed to the hospital. When they checked in for the ultrasound, my baby wasn’t moving and her heart rate was in stable movement without any fluctuations. I felt her last strong kick at that time. The doctor tried to check my cervix and it was not fully dilated. Then finally they called for an emergency c-section since my baby has no movements. I signed off the paper and insisted my brother not be in the operation theater to be with me. I went with mixed feelings all alone to the operation theater and I wasn’t ready for it mentally. I started to panic and the moment when the chief doctor said that my baby is in danger, I calmed myself down, later I lost consciousness due to anesthesia and the procedure was done. My baby came out into this wonderful world at 6:25 am and she was immediately shifted to the NICU. I have been shifted to the labor room. After I woke up, my brother and my friends were around and I spoke to my husband on the phone emotionally.
We were all eagerly waiting to see my beautiful baby. On that day at noon, the doctor came to my room and said that my baby looks fine but paused for a while, which made me start to feel worried. Later the doctor said that my baby isn’t moving or crying right after delivery. She had frequent seizures and her joints were stiff with no activity. That put me in shock like this cannot happen all of a sudden. My thoughts started to fade away. Doctors decided to take an MRI scan of her brain and some blood work. She had stiffness in her joints, seizures and not responding much. Later when the MRI reports came, doctors said that my baby had a severe brain injury that was caused by SEVERE HIE. I was shocked and in silence with no words, started to panic. Doctors said that she can’t move anymore nor recognize us. There is no hope for her recovery from this trauma. Each day she was in CPAP with repeated blood work. I was lucky enough that she was fed with my breast milk. I regularly pump my milk and go see her twice a day – by morning and before bedtime. I believed in miracles and I was continuing our bedtime routine by sharing with her how the day was spent. My husband got stuck in India due to Visa issues and whenever possible he sent a voice note for her daughter to listen to his voice. And by the side, my brother also started to speak to her, touched her, and made some fun with her. I’ll hold her cute little hands and that’s the only way I was able to feel her and feel how hard she is trying for her life. In the middle of this trauma, every day and my brother will be having a meeting with around a few doctors who try to explain the severity of this HIE and insist that we decide about her life that is best for her. After every meeting, I had no option but to burst into a painful cry at the end. All those miseries I’ll try not to show up in front of my daughter, instead, I’ll put on a happy mask with a strong comeback to just hold her hands and be with her. Despite all of our efforts, she hadn’t improved much. As days passed by our hope started to fade because there was no improvement and one fine morning all of a sudden we got a call from the hospital that she was kept under a ventilator since cpap wasn’t enough to support her oxygen. On taking an X-ray they found out that her lungs were not expanding much and there was not much oxygen flow. Meanwhile, after several tries of sending letters from the hospital to the Visa authorities in India, My husband couldn’t make it back to the USA since those letters became of no use. He was fully heartbroken that he wasn’t able to be with us at this breathtaking intense moment. This all happened on March 23, 2022, and we had a serious discussion with all the doctors. The OB-Gyn, who had 25 plus years of experience, sat near me with other doctors and explained the practicality of my daughter’s life. Considering her future, it’s time that we need to decide her last day in this world. I made up my mind for this, which expressing in words here won’t explain the feelings that myself and my husband have gone through. The sooner we decide the better it is for her. I came back home with my brother and called back my husband through a phone call to decide what is best for her and when is the day. After a long sorrow ness feeling shared far away between us, we decided to let her rest in peace on March 27, 2022, the very next day of my husband’s birthday which is on March 26. And the doctor also insisted on being ready a stay at the hospital since at times the time may vary for the last breath.
I had only one focus – Make my daughter have a peaceful death by giving the last good comfort and spending time with her. Being alone here with my brother and husband stuck in India, I need to prepare myself to be stronger with my body has undergone a C-section which was not completely healed. I packed my clothes and got ready to go to the hospital the next day to be prepared for everything and made up my mind even stronger to handle this smoothly for her.
On March 27, 2022, I and my brother went to the hospital at 10 am with our clothes bag. Meanwhile, I had also started to wean down my breastmilk, in order not to get mentally stuck that I am going to miss her even more. Around noon, my breasts started to feel heavy and painful, so I gave them a last pump before they started to begin the procedure with my baby. That was a very painful pump for me and I did it. Then the NICU nurses came to start the process and by the time my baby was completed with the last milk feed. They first started to record my baby’s heartbeat while she was on the ventilator to have it as a memorable keep of her. Then they pulled out all the wires and took away the ventilator. She was wrapped with the swaddle and handed over to my hands to have her comfort during the last precious moments of her. My husband was connected through a call and he was also available during those last moments. He wasn’t able to come through the video call since he was completely shattered.
All I could smell was full of medicines rather than the baby smells. I was heartbroken looking at her undergoing a lot of medications. I heard aloud of her breathing difficulty and all I did was to hold my mind and heart stronger to make her feel that I am with her no matter what. Then they shifted us to a private room to spend some personal emotional time with her without affecting other babies and parents at the NICU. Once we got shifted there, I bought her a beautiful dress that I wished to wear for her. With the help of nurses, we wore the dress for her and they handed over the baby to me. But once they handed over the baby, all of a sudden her oxygen went all the way down with a long gasp. The entire room went silent and I was stunned with a miserable feeling. The nurse checked the heart rate and confirmed that she is not breathing anymore. Then they called in for Doctor and after his arrival, he was surprisingly shocked that my daughter rested in peace sooner than expected. He blessed my daughter and me saying that I have done well for her and that she hadn’t suffered much.
I started to burst out in tears that she gave up so soon to not make me more miserable and heartbroken and that I believe she was so happy when I wore her the dress that made her so pretty. My husband the call was speechless and the NICU nurses comforted us that we had done what is good for her and that all of her blessings are always there with us.
And finally, I fully cleaned her with the help of NICU nurses, wore her pretty shoes and hairband, and took a picture of her. She looked so pretty that I felt miserable, I could no longer dress her like this. We gave a good send-off to her to be kept in the mortuary until we proceed with the burial process. Finally, the NICU team handed over me the Memory box of my cute little daughter’s belongings and also the remaining breast milk which I had the plan to donate to the milk bank who are in need.
I was able to hold her only twice in the hospital and those were the short moments that I cannot forget because I felt her by holding her closely with all the tubes surrounding her. The misery part is that whenever anyone tries to touch she startles and the oxygen fluctuates. So we all handled her with care. Mostly I’ll hold her hands and keep her engaged. It’s those short and sweet moments with her that I could think and make myself happy rather than being so heartbroken.
We reached back home with her belongings and started to donate all her clothes, crib, mattress, and every other product. I had only her memory box, a teddy with her heartbeat, and a dress. For all others, I quickly donated so as not to take much time, since the sooner I do it the better I can overcome this misery. Then my brother and two other people started to look for burial options and we ended up doing cremation since I insisted that this be done sooner for her without making her soul wait for two or more weeks per the burial center process. I asked my husband whether any progress with him coming back to the USA at least to scatter her ashes. But with no luck, he was stuck with no Visa approvals. Then we discussed whether I can keep her ashes at home until his arrival and then scattering with him. But finally ended up doing it all by myself along with my brother and friends since we don’t want her to wait and let her be happy and peaceful in heaven. We kept her name “Tvarika” meaning OCEAN and decided to scatter her ashes that reach the ocean so that we can feel her from any of the oceans wherever we are staying. So we ended up scattering her ashes at Golden Gate Bridge in San Francisco. That was the last good thing we have done for her to make her a happy soul and our precious daughter to be with us forever in our memories.
As days passed by, my husband and his mom finally were able to come back to the USA after several tries. I shared the memory box with him and he felt so heartbroken and saddened that he was not there with us during those times and he hadn’t seen her nor touched her. What a misery for us, since my husband hadn’t seen his Dad as well as his Daughter and there were two losses in our family in the same month!!! It shattered our goals and dreams and we were left clueless oh how will be our life going forward?
One thing that my daughter made me recognize is that I am stronger than I thought I was. I was bold and braver than I usually used to be and she made us understand that we as a couple are stronger with lots of love and care. She made us realize that we can handle any situation anywhere even though we are not near each other. That strength made us recover and continue with our normal life at a much quicker pace. Even though we had ups and downs, we were able to lift each other whenever we felt low and helpless. We had a better understanding than before and we started to have conversations about restructuring our goals from scratch. We took care of my husband’s mother in the middle of this misery since she was also shattered by her husband’s loss. I agree that we didn’t have much privacy nor time to express our feelings or grievances between us, instead, we just went with the flow by holding our thoughts stronger without losing hope. Because of this strong willpower that she made me realize, I was able to recover from the C-section sooner.
How did you first hear about the diagnosis of HIE?
Through OB-GYN Doctor and Neurologist. After a brain MRI scan, my daughter was diagnosed with severe brain injury with HIE – Severity.
How did you first hear about Hope for HIE?
We heard about “Hope for HIE” through the social worker who was there during my entire journey at the hospital.
What do you want the world to know most about your story and HIE?
One thing I wanted to say to the family/parents who lost their dear ones, no matter what misery brings to your life, the stronger you hold for each other, the sooner you can overcome this misery. It’s a part of our memory that doesn’t fade away and travels throughout our life. Heal through the pain and don’t ever go down. Embrace the sweet and happy moments with them, bring out the strength and courage from you, and enjoy life as it’s the only thing that’s precious for us. Believe in yourself and your family and this is not the end of the road. We can start building new paths where miracles might happen. Don’t give up and make proud of your dear ones by stepping forward.
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