Raising a Child with Haemophilia
Boss Naari: Hi, Renuka ji. Thank you for being with us today. Can you take us back to when you first found out your son had haemophilia? What was that moment like for you?
Renuka: Ah, I remember that day vividly. Karthik was around 11 or 12 years old. It came as a complete shock to me. Throughout his childhood, he had several unexplained symptoms like swelling, and red patches on his limbs, but none of the doctors could pinpoint the cause. It was only when one of our neighbors, a doctor with an M.D degree, suggested getting a test for haemophilia done, that we got the answer. It was a day that I could never forget in my life. I was devastated, I didn't know anything about haemophilia and my mind went completely numb. Even now, talking about it brings a lump to my throat. I remember feeling completely lost. But I knew I had to step in and take care of my son. That instinct to protect my son pushed me. We visited a hematologist shortly after and began the necessary care for him.
Boss Naari: That must have been such a difficult time, Renuka ji. How has this journey changed you as a person and as a mother?
Renuka: My husband used to work in the Navy, which meant he was always traveling. So it was just me and my son, riding the wave. Being the sole caregiver brought its own challenges, but it also taught me a lot. This journey has made me stronger and more patient. As a mother, I became more protective and learned to trust my son's strength. Watching him face this illness with grace and resilience has made me incredibly proud. One more thing this journey has taught me is compassion—not just for my son, but for everyone. And that’s why I’m here today, to raise awareness about haemophilia and, hopefully, offer some strength to those who are facing it themselves.
Boss Naari: You’ve been through so much, and it’s amazing how you’ve turned all those challenges into strength, compassion, and purpose. What do you do for your mental well-being while caring for your son?
Renuka: Being a spiritual person, I believe Lord Ganapathi Bappa has always been there for us, guiding us through everything. I visit the Siddhivinayak temple every year, and just praying to him gives me so much hope and assurance. When Karthik had his first episode, he was completely bedridden for months. We went from one hospital to another, searching for a diagnosis, but found no answers. One day, I took him to the Siddhivinayak temple, and I genuinely believe that through Bappa’s miracle, we began to see a change in Karthik’s condition.
Boss Naari: Wow, that is truly something else. Have you ever felt guilt or self-blame? How did you navigate those feelings?
Renuka: Yes, primarily when I couldn't protect him from the challenges that come from haemophilia. As a mother, it's hard not to feel the urge to protect him from every bit of that pain. During moments like these, I try to remind myself that I am doing my best. I try to focus on the positives and acknowledge how far we have come together. It is crucial to realise that some things are beyond our control. Also, talking to someone who understands what I am going through helps a lot. Our physician once told me, “There are so many children in the world who don’t even have access to proper care, just go walk into a child cancer unit.” That reminder helps me stay grateful for the support and treatment we've been able to receive.
Boss Naari: I know it's not easy to stay hopeful in such challenging times, but the way you’ve handled everything is genuinely inspiring Renuka Ji. What has been the most emotionally challenging part of raising a child with haemophilia?
Renuka: The most emotionally challenging part of this journey is the constant worry about his safety. You know, that unshakable fear that quietly sits in the back of your mind, always there, no matter how hard you try to push it away. One thing you need to know about Karthik is that he loves cricket. He would head to the ground every chance he got, which made it really difficult for me—because physical sports can be so risky for him. Even when we’re being extra careful, just one tiny cut or bruise could be life-threatening. Of course, he understands the gravity of it now, but back when he was a kid, he gave me a tough time.
Boss Naari: That must have been so tough for you. Have you faced any stigma or insensitive remarks from others? How do you deal with that?
Renuka: Of course, there have been comments made out of ignorance. Over time, I’ve learned to let go of the negativity and focus on the positives. When it’s someone close to us, and I feel they’re open to understanding, we take the time to educate them.
Boss Naari: What precautions did you have to take that other parents might not think about?
Renuka: As a parent of a child with haemophilia, I have to be extra cautious about everything. I make sure he avoids activities like sports that could lead to injuries. Even when we go to the dentist—for something as routine as a tooth extraction—I always inform them that he has hemophilia. The same goes for any doctor we visit for medication; they need to know he has a bleeding disorder so they can treat him accordingly.
Even a small injury or cut can turn into something serious. That’s why I keep a close eye on his medication and make sure we always have a supply of Factor VIII on hand, especially in case of emergencies. Factor VIII is a clotting protein that people with haemophilia A are missing, and it helps their blood clot properly. Without it, even minor injuries can lead to serious bleeding. I would tell other parents that if your child has hemophilia, always keep emergency care and Factor VIII nearby. You never know, something as minor as a twist or a bump can lead to something serious.
Boss Naari: What has been the most overwhelming moment for you in dealing with Karthik’s health challenges?
Renuka: It’s definitely been overwhelming, there have been so many emotional moments. There are times when I feel depressed, but I try to stay strong. I have to, because managing everything, especially with Karthik’s condition, would be impossible otherwise. In addition to haemophilia, Karthik also suffers from Crohn's disease. His diagnosis of haemophilia was delayed, and as a result, he had to be on steroids for an extended period, which led to further complications. He developed steroid-induced avascular necrosis, and just last year, he had to undergo hip replacement surgery. That’s why I feel like I have to be strong—not just for myself, but for him. I always try to stay mentally strong and be there with him, taking care of him the best I can.
Boss Naari: Your strength is truly inspiring. It must be incredibly tough at times. Did you feel supported by your family and friends throughout this journey? What has your support system been like over the years?
Renuka: My family has been incredibly supportive throughout this journey. My husband, even though he's far away, has been a constant source of strength. My cousin-sister, who’s a doctor, has been the pillar I could lean on during the toughest times. My elder son struggled when he was younger. He would act out because most of my attention was focused on Karthik. But as he’s grown, he’s come to understand the situation. Now, he’s incredibly supportive and always looking out for his brother. Even my sister-in-law, who recently joined our family, steps in to care for him when I’m not around. Their support means the world to me.
Besides my family, our dearest friends and neighbors have been a constant support. They’ve been there for us, day or night, whenever there’s an emergency. Whether it’s a hospital visit where I need to take Karthik, they’ve always been there to look after my eldest son at home, or even during a sudden episode, they’ve never hesitated to help.
Boss Naari: That sounds amazing, Renuka ji. If you could tell every parent one thing about raising a child with a rare condition, what would it be?
Renuka: I would tell every parent, and every parent-to-be, to be patient with themselves and their child. It’s a journey full of challenges, but don’t be afraid to ask for help. Lean on your support system and remember that you are not alone. I’ve always encouraged Karthik to push beyond the limitations of his conditions and explore his true potential. I believe that, as parents, the encouragement and unwavering support we provide our children are crucial in shaping their confidence and self-esteem.
Through Karthik's Eyes
The Emotional Toll of Chronic Illness
Dealing with a chronic disease doesn’t just impact your physical health—it deeply affects your emotional well-being too. Growing up with haemophilia meant I was restricted from any kind of physical activity. While I understand the reasons now, as a child, it was incredibly frustrating. I often experienced anxiety due to the unpredictability of spontaneous bleeding, and the isolation that came with these restrictions made loneliness hit even harder.
Coping with Loneliness and Finding Joy
It was a difficult journey, both mentally and emotionally, but those challenges helped build my resilience. To cope with the loneliness and emotional stress, I found comfort in hobbies like meditation, painting, reading, positive affirmations, movies, and sports. Even though I couldn’t participate in sports myself, I found a lot of joy in watching them. I follow almost every sport out there—cricket, badminton, tennis, swimming, football—you name it, I’m into it. One of my biggest dreams is to watch Wimbledon or the Olympics live at least once in my lifetime.
Raising awareness
Ever since I began my journey with haemophilia, I’ve come across different kinds of people. Some were already aware and understood the seriousness of the condition. Others, though unfamiliar, were open and willing to learn. But there were also many instances where I had to deal with ignorance and insensitive remarks. That’s why I am trying to do my part for society by spreading awareness about conditions like haemophilia and Crohn’s disease so that people are better informed and more empathetic.
If I could offer one piece of advice, I would say,
Don’t be afraid. You will learn to manage it. Don’t limit yourself; be open to trying new things and exploring your potential. It might feel overwhelming now, but as you grow, you’ll figure out how to live with it, and it will become just one part of your life, not something that defines it.
