Day 21 of Blogging for TSC Awareness

by guest blogger Debdatta Bhattacharya  (Portland, Oregon)

I had always been in control of my life. I faced challenges but I knew if I work hard I will get over them. I was born in India into a loving family and had an amazing childhood. After I completed college I wanted to come to the U.S.A. for pursuing my PhD in physics. My parents were not happy with my decision because it was so far away from home. But I was adamant; it was my life right ? After a couple of years of coming to U.S.A, I married my college sweetheart. Six years later, both of us got well paying jobs at Intel in Portland, OR. Life was good. Finally it was time to sit back and relax and enjoy all those years of hard work at grad school. In 2010, our first born, our daughter Bartika arrived in our life. Oh what a joyful time that was, the exhausting but delightful days of nurturing her and caring for her, the ecstatic feeling of bringing new life into this world.

In 2013, I got pregnant with my second child. We found out it was going to be a boy. Everyone was excited, “oh you will have one of each”. We personally didn’t care; we just wanted a healthy child. I started planning, like I have for all other major events of my life. We sorted through all our daughter’s toys, separating infant toys from toddler toys, packed them in separate bags. I hired someone to help me out in the first few weeks after baby #2 arrived. I can’t believe it now; I even almost planned the weekly menu with her so that there would be one less thing to do.

On my 37th week of my pregnancy, we went for a routine ultrasound. I was excited to see him one last time before actually holding him in my arms. After the ultrasound, my doctor came in the room and told us “there is something wrong with the baby’s heart.” Those words and her voice still ring in my ears. We were quickly packed off to be seen by a neonatalist. He had no idea what was going on other than the fact that my baby had unusual thickening in the wall of his heart. We were told that there is no guarantee he will make it out of my womb. Such cruel words told with such heart wrenching indifference. I felt like someone just stabbed me in my chest. My child was still kicking inside me; how could any of this be true? Later that night, we got a call from a pediatric cardiologist. He said it looks like your baby has “tuberous sclerosis” (I first thought he said tuberculosis). That was the first time we had heard this term. The doctors wanted to do a c-section, but they wanted to wait a few more days to give him a chance to grow a little bigger. The little signs around the house that showed our readiness to welcome the new baby came back to bite us. The new baby clothes delivered at our door step, the unopened car seat, the toys, the laid out crib seemed to mock us. For the first time in my life, things were not in my control.

The inevitable question of “why me” kept me awake at night. We were told “law of nature” by the doctors. But we had been good to nature, recycling, reusing, installing solar panels, driving a Prius, you name it, then why us? We have given to charity, been reasonably polite with everyone, been sincere and honest in our job, then why was our dream of a perfect life being shattered so ruthlessly. I haven’t found any answers yet. But with time I have realized that most people are basically good and nobody deserves to go through this pain. But life happens and other than gracefully accepting it we don’t really have much of a choice.

We had a faint idea that TSC could affect our child in multiple ways but at that point of time we were concentrating on his heart tumors. We went to Seattle Children’s Hospital so that he had all the heart surgery options if he needed any. My beautiful boy Arij, was born on 7th April, 2014. Miraculously he did not need any surgery or medication. All the doctors had told otherwise but he proved them wrong. It was overwhelming because my arms were empty and my baby was in cardiac ICU (just in case) and a bunch of MRIs and ultrasounds were being performed on him. I had about 48 hours of absolute happiness till the doctors came back and told us he had tumors in his brain. For the first time after his diagnosis, I opened the internet and started reading about TSC. I had intentionally stayed off because before his delivery there was nothing much to do with all that information anyway. I saw terms like, seizures, developmental delay, mental retardation, autism, mentioned in a matter of fact way all across the internet. My heart sank and I cried and cried. Was I not allowed to enjoy even a few hours of my baby’s presence before being engulfed in worries again? While I recovered from my c-section, I tried to make sense of all this information. We came back home after staying for 12 days in the hospital. The first night we spent at our home as a family will always be etched in my memory. It was such a happy feeling to be home as a family for the first time, no hospital smell, no monitors, no doctors.

My husband spent the next few weeks in doing extensive research on infantile spasms and what it looked like. We had realized that we can’t control everything but we will control whatever little we can. We installed a motion detecting video camera over our son’s crib so that we could detect the first signs of infantile spasms. We prayed that we never detect anything but unfortunately around two months of age he showed some early symptoms of infantile spasms. He was started on sabril and everything was under control again. I took time off from work and took care of him. A bunch of therapy sessions started around 4 months. He was doing wonderfully till he was about nine months. That is the time when new seizure activity started. More tears, more heartbreak and more panic followed. He started falling back developmentally. The local neurologist was unable to control his seizures. Arij being his sweet self, of course just smiled through this all. We finally decided to take him to Cincinnati TSC clinic. I am so glad that we took that decision. The medicines were changed and he was put on new medicine. It took a while for him to react positively to the medicines. Patience is not my forte but life taught me to be patient. He is doing much better now but he still has some seizure activity. He is still delayed developmentally but he is making steady progress. We celebrate all his milestones. We have learnt to find happiness in the smallest of moments. We are going to start him on afinitor soon with the hope that it will control the remaining seizure activities that he is having.

It is still difficult for me write down the positive aspects of this experience. I have lived most of my life without TSC and I was quite happy. TSC has taught me a lot of things but I wouldn’t have minded leading the rest of my life without these learnings 🙂 One of the key things is of course that I have to let go of things and situations and I can’t control everything. The other is patience. I keep working with my son on a certain skill, day after day without seeing the desired result. But when I get there, I can’t describe the satisfaction and sense of achievement that I get. I also got to know the true color of many of my so called friends. Some have abruptly discontinued all contacts with me and some have stepped up to give me emotional support. We will continue fighting this battle with Arij. Amidst all these uncertainties, there is one certainty; he will always be surrounded by unconditional love.