Heart Voices: Stories That Unite Us – Meet Suchismita Halder
A Life Turned Upside Down
After spending two years in the USA as a postdoctoral researcher, I returned to my hometown, Kolkata, eager to live with my family and build my career here. Shortly after, I conceived and decided to wait until my baby was born before resuming work.
I thoroughly enjoyed my pregnancy. Apart from gestational diabetes, which was managed with dietary changes and 30 minutes of daily walking, there were no medical complications. At 37 weeks, I went into labor at 1 a.m., and by the following afternoon, Ethan was born via a C-section! He made quite an entrance—an angry little baby clearly displeased about leaving the comfort of mummy’s tummy.
The next day went by in a blur of joy and exhaustion. Friends and family visited, and I finally got to hold Ethan in the feeding room while he slept. He was kept in the NICU, which the doctors assured me was standard practice since he was preterm and had intrauterine growth restriction.
On the second day, the pediatrician informed us that they heard a murmur in Ethan’s heart. They planned to consult a pediatric cardiologist. That night, our lives changed forever.
We were told that Ethan had a critical congenital heart condition—a missing pulmonary artery and a large hole between the lower chambers of his heart. I don’t remember much after hearing the news; I was completely numb, struggling to process it.
We were transferred to a tertiary care hospital with a renowned pediatric cardiology department. That night, my entire world turned upside down. Life suddenly felt so uncertain, and nothing would ever be the same again.
The Search for Answers
The first challenge was understanding Ethan’s diagnosis—or rather, trying to explain it to my family. The cardiologist had said, “Ethan’s condition is very critical. IF he survives until 3 months of age, we will perform a CT angiogram to get a clearer picture of his heart condition. Only then can we discuss possible surgical interventions. For now, it’s best to take your son home, as there isn’t much more, we can do for him in the hospital.”
Coming from a biology background, I understood the gravity of the situation right away. However, as a mother, the inability to “fix” my newborn’s condition left me feeling utterly helpless and terrified. I decided to move in with my parents so they could help. As grandparents, they showed immense strength, but for us, life became deeply uncertain. Even now, I avoid planning too far into the future.
By the time Ethan turned 3 months old, we had consulted four separate cardiologists. Each confirmed the same diagnosis and prognosis, yet none addressed my concern about Ethan’s persistent yellow skin and eyes. This had been apparent since birth.
Frustrated, we decided to change our pediatrician. During the consultation, we shared Ethan’s heart condition and emphasized our concerns about his liver. The pediatrician immediately ordered a liver function test. When the results came back, we were stunned. Every parameter was alarmingly out of range. The lab even rechecked the data twice to confirm it. Ethan was referred to a gastroenterologist.
At our first visit, the gastroenterologist examined Ethan and suggested he might have a genetic disorder called Alagille Syndrome. She noted the facial markers typically associated with the condition. Genetic testing confirmed the diagnosis—Ethan did, in fact, have Alagille Syndrome.
Ethan was given medicines for his liver. It was a profound relief to see some improvement, but the diagnosis didn’t mean he was “cured.” Instead, the diagnosis gave us clarity and allowed us to make informed, difficult decisions about his treatment. Managing Alagille Syndrome requires a multidisciplinary approach. In Ethan’s case, his care team includes a pediatrician, a cardiologist, a gastroenterologist, and, occasionally, a dermatologist.
Now, Ethan is 5 years old and has several developmental delays. However, we’ve learned to give him the time he needs. He eventually catches up in his way and at his own pace. When the battle is for life itself, developmental delays become the least of our worries.
Turning Challenges into Action
While the journey has been far from easy, having a proper diagnosis has empowered us to navigate Ethan’s condition with greater understanding and hope. Reflecting on the past few years, I realize that three key things have helped me cope:
- Knowing the Diagnosis: A diagnosis brings clarity, but it also comes with a lot of guilt—especially when it’s genetic. In Ethan’s case, we weren’t sure if it was hereditary or due to a de novo mutation, as Alagille Syndrome can occur either way. My husband and I handled this aspect well, never letting the diagnosis create a divide between us.
- Having a Strong Support System: My immediate family and friends have been my pillars of strength. I could always count on them, knowing they would do anything to help when needed.
- Finding a Community of Parents: Connecting with parents on similar journeys has been invaluable. Learning from their experiences, understanding how they cope, and seeing how they advocate for their children has been inspiring. Above all, it’s comforting to know you’re not alone.
As I learned more about the challenges faced by children with rare diseases and their families, I realized how much work needs to be done. Children with congenital heart defects (CHD), rare diseases, or chronic conditions face countless hurdles—so do their parents.
With this in mind, a few like-minded parents and I came together to form an organization called the Rare Warriors of Bengal Association.
The Rare Warriors of Bengal Association is a non-profit organization dedicated to improving the lives of children with rare diseases and their families through advocacy, awareness, and medical support. We educate newly diagnosed families, healthcare providers, and the community to ensure better access to care and to navigate disease management effectively.
Our mission includes:
- Advocating for essential facilities and insurance coverage.
- Promoting social inclusion for children with rare diseases.
- Offering support through a network of professionals, including lawyers, teachers, therapists, and social workers.
Together, we strive to create a more inclusive and supportive environment for children with rare conditions and their families, ensuring they receive the care and opportunities they deserve.
