Name: Kavitha Rajan
Location: Arizona, United States
Child’s Birth Year: 2018
Keywords: Immigrant, Navigating Sibling Relationships, Seizures/Epilepsy, Cerebral Palsy
When Kavitha first immigrated from India to Arizona in 2014 for her husband’s work, she thought this would mark the biggest transition in her life. Not only was she leaving behind a family, culture, and life she had always known, but she had just given birth to her first child, Uday. On top of navigating life in a new country on the opposite side of the world, she was simultaneously introduced into motherhood. In India, she, along with her husband, had both received degrees in engineering. While she couldn’t work when she initially moved to the States, due to her visa status, after a few years, she was able to transition back into the workforce. However, just as she was beginning to get used to this new routine—settling on a steady rhythm of balancing work and parenting, as well as finding a solid community of friends in the Phoenix area—her life was uprooted even more than it had been when she first immigrated. On October 4, 2018, with the birth of her second son, Shiv, Kavitha once again entered foreign and unfamiliar terrain.
Everything was running smoothly with Kavitha’s pregnancy until around thirty weeks in, when it was discovered that Shiv was in a breech position. Because of this atypical position, the obstetrician decided that Kavitha would need a C-section. A few weeks later, Kavitha had contractions earlier than the scheduled date for the surgery, so she rushed to the hospital. The contractions still hadn’t stopped a few hours later, and doctors noticed that Shiv’s heart rate was spiking. At that point, Kavitha had an emergency C-section.
When Shiv was delivered, he didn’t cry, move, or open his eyes. He was barely breathing on his own, so doctors attempted CPR. Shiv still wasn’t very responsive, and he was rushed off to the NICU. In the coming days, Shiv didn’t move his hands or feet at all, and it wasn’t until ten days after birth that he first opened his eyes. He was hooked up to a BiPAP machine to assist with his breathing, and he received an NG-tube for feeding.
For the entire first month, Shiv remained in the NICU, and Kavitha felt completely in the dark. She had never experienced anything like this with her eldest child, and the doctors weren’t giving her any answers or providing a diagnosis. It seemed as if they were as confused as she was. Even though the MRI showed brain injury, the term “hypoxic ischemic encephalopathy” was never mentioned as a possibility. Aside from the brain injury, all of Shiv’s internal organs seemed to be functioning relatively normally, as indicated by his newborn screening tests. During this month, Kavitha felt extremely frustrated that the doctors still couldn’t put a label on what was happening to Shiv. She was also in a state of denial, thinking that, if the doctors couldn’t seem to locate a problem, maybe that meant there wasn’t a problem to begin with.
After that initial month, with still no answers, Shiv was transferred to a larger hospital so he could undergo surgery to have his G-tube inserted. The plan was to go to the hospital, have the surgery, and be discharged shortly after. However, as Kavitha was becoming used to by now, things didn’t go according to plan. While Shiv was being monitored with the EEG machine, physicians realized he was having subclinical seizures. It was at this point that physicians began to realize, perhaps, there was a larger issue beyond Shiv’s visible symptoms…after all, he was unresponsive to any external stimuli, such as touch.
Another MRI was ordered for Shiv, and, after forty days filled with confusion, Kavitha was finally told that her son had experienced a hypoxic ischemic brain injury. It was a relief to finally have a diagnosis and more answers, but, with all of this, came the grim news. Kavitha and her husband were told that, due to the extent of Shiv’s injury, it was likely he would be nonverbal and wheelchair-bound his entire life. Moving to the United States to give her children access to opportunities for success, Kavitha could have never pictured this life of dependency for her son. Without her husband by her side offering support, she doesn’t think she would have made it through those next few days, where they had to make a flurry of decisions, with little time to process all the new information.
Five days following the HIE diagnosis, Shiv underwent five different surgeries at the same time, for various issues, such as correcting the G-tube, inserting a trach, and repairing hernias. After seventy-eight days in the hospital, numerous procedures, and extensive training for Kavitha and her husband on how to handle all the medical equipment, Shiv was finally discharged.
Throughout their NICU stay, Kavitha desperately yearned to leave the hospital environment. She took pride in her independence, so, initially, she wasn’t open to admitting she needed outside support. When doctors tried to talk to her about Shiv’s future, or when she was offered resources, such as a disability tag for Shiv, she was hesitant. In her mind, she was just going to take Shiv home, and everything would be fine, just how it was with Uday. She actively blocked out thinking about what a life with disability meant for Shiv, but she soon came to realize that ignoring this new reality wasn’t an option.
Even after being discharged, there was no escaping the hospital environment, no matter how much Kavitha wanted to. The lines between home life and hospital life began to blur. With all the machines taking up space in the house, and medicines lined up in the cabinets, home began to feel like a hospital room. The family dynamics completely shifted, too, and the transition home was especially rough on Uday, who didn’t understand what all the machines meant. Furthermore, even post-discharge, Kavitha found herself making the thirty-minute drive to the hospital every two to three days for Shiv’s various follow-up appointments, from GI appointments to neurology appointments to pulmonology appointments. On top of all that, she had to take Shiv to various early intervention therapy appointments, like physical therapy and occupational therapy.
About a month after Shiv was initially discharged from the hospital, he was rehospitalized for three months due to an elevated heart rate. While there, he was diagnosed with both dystonic cerebral palsy and infantile spasms. For the infantile spasms, Shiv was treated with steroids, which adversely affected his digestion. At that point, physicians decided to test out a formula change and give Shiv even more medications. By the time Shiv came home from the second hospital stay, he was taking upwards of ten different medications a day. The past two years and seven months that Shiv has been alive have been characterized by a constant back and forth between home and hospital, and, in total, he has been hospitalized around fifteen different times.
Before his most recent hospitalization, Shiv had started on a ketogenic diet to help manage a severe form of epilepsy he has called Lennox-Gastaut syndrome. While the specialized diet was effectively managing his seizures, Shiv wasn’t gaining the weight he needed to, so, in April, he was hospitalized while weaning off the keto diet. At the hospital, Shiv ended up getting yet another trach infection, resulting in a stay of almost two months. As Kavitha likes to phrase it, “Everything is going smoothly, until it isn’t.” HIE, and life in general, in a nutshell.
However, though this journey is far from easy, Kavitha has learned so much along the way, growing both as a mother and person. In the beginning stages, Kavitha was wary of reaching out for support, as it made the situation all too real. While Kavitha accepted help from her mother, who flew to the States from India to take care of Uday, she didn’t make the most of all the resources available to her at the hospital. In part, this was because Kavitha often felt “othered” as an immigrant. She thought that, because she didn’t have citizen status, she wouldn’t qualify for many of the same support programs that citizens benefit from.
Reflecting back upon her experiences, Kavitha realizes this isn’t true. She now knows that, when you’re brave enough to ask for help, there is a network of people willing to provide much-needed support. To any HIE parents who are immigrants, or do not have citizen status in the United States, Kavitha hopes to spread the message that, just because they are from a different country, they shouldn’t be afraid to speak up for their children. Immigrant parents, just as much as anybody else, have the right to express how they feel to physicians, to get questions answered, and to have access to the proper resources. For instance, if you are a parent who does not speak English, you have the right to ask for a translator to assist you in communicating with the medical team.
Kavitha actually stumbled across Hope for HIE on Facebook before the doctors had even introduced her to the term. But it wasn’t until she was definitively told that Shiv suffered from HIE that she began to more seriously look at the various Hope for HIE support groups. Hope for HIE was extremely helpful in connecting Kavitha to informational resources about Shiv’s various conditions. Now, she hopes to also repay the community by sharing her lived experience as an Indian immigrant. Navigating life and the NICU journey with an HIE child is already overwhelming enough. Adding the variable of going through this process in the context of a country and culture that is still foreign to you, complicates things even further. It is these immigrant families that Kavitha wants to connect with, for she knows firsthand just how lonely, terrifying, and invalidating it can be, feeling like you’re not worthy of the same rights as everyone else.
While their family dynamics have shifted dramatically since Shiv was born, Kavitha credits Shiv with teaching the family so many important lessons about life in general—it’s funny how the smallest children can be the biggest teachers. For instance, because of Shiv and this journey, Kavitha has learned that, once you start accepting that things in life rarely go according to plan, the more lighthearted you can feel. For her, letting go of the need to try to control everything was wholeheartedly freeing. The second she finds herself thinking thoughts like “I’m going to get Shiv walking,” her heart tells her, “No. Accept that you cannot force milestones on Shiv, and just love him for where he is at today, regardless of ability.”
And she doesn’t just love Shiv…she adores him. The whole family adores Shiv. They jokingly refer to Shiv as the “king” of the family and to themselves as the “servants” or “guardians” whose duty it is to protect King Shiv. When Uday asks Kavitha why she spends so much time with Shiv instead of him, Kavitha likes to say, “Because the king needs all the attention. And when the king is satisfied, there is peace in the kingdom.”
She knows that the whole process has been really hard on Uday, but she tries to add banter and humor to the situation as much as possible. It wasn’t just her entire life that was uprooted, but Uday’s, too, and that understandably has made him feel angry at times. Kavitha advises HIE parents who have an older child that, while it may seem like you are protecting them by not telling them all the scary stuff, this can just lead them to feel left in the dark. They may not know why Mommy or Daddy is sad, and they may not know the right questions to ask.
What helped most was engaging Uday as much as possible and involving him in Shiv’s care. For instance, whenever she does more fun activities, such as reading to or playing with Shiv, she includes Uday. Because of this, Uday has become an amazing older brother and helper, both within and outside of the household. For instance, now, when a kid falls down on the playground at school, Uday is always the first one to make sure the kid is okay. Kavitha has seen various tangible benefits from including Uday, instead of trying to shelter him from the realities of Shiv’s situation. Not only has her relationship with Uday strengthened, but he has grown to be an extremely kindhearted and caring boy.
Shiv inspires Kavitha to keep swimming against the currents of adversity. When she feels like caving in, she thinks of Shiv and how he has remained so brave, in spite of all the hospitalizations, treatments, and surgeries. She is reminded that, if Shiv can fight so vehemently for his life, she can keep fighting for him too. While he may not be able to do all the same things Uday can, Shiv is amazing in and of himself. Kavitha avoids comparing Shiv to Uday, or to other HIE children, because she feels like that is just putting Shiv down. As a mother, she aims to empower and uplift both of her children, not only seeing them in terms of what they cannot do. Since Shiv was born, many of Kavitha’s friends have marveled at her, calling her a “supermom.” However, Kavitha views herself as just doing what any mother does—showing up for both of her children and tending to their unique, individual needs.
Kavitha is also proud of the self-growth she has experienced. In the beginning, she was closed off to receiving outside support from healthcare workers, but now she has come to view accepting help as a sign of strength, instead of weakness. There are various nurses that come to the house to help her take care of Shiv and manage all the medical equipment, such as the trach. In the beginning, it was difficult for her to give up that control and let others take care of Shiv, since she liked things done in a specific way. Once she began fostering friendships with the people who were only trying to make the journey smoother for her and Shiv—whether the home nurses or the therapists or the social workers—her life became significantly better.
Clearly, Kavitha is no stranger to adapting to new environments, whether that environment is the United States or the hospital setting. Throughout the past few years, she has learned that, no matter how much she may want to, she cannot predict what tomorrow will hold. While this can be daunting, she knows, no matter what happens, the beautiful kingdom she has created with her family—built on a foundation of unconditional love and support—will never crumble. And while Shiv may not look like a neurotypical child, he is better than “typical.” He is Kavitha’s whole world, her favorite teacher, her little fighter, and her king.
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