I clearly remember the day my son was born. I looked into his eyes, and at that moment, I knew that I would forever put myself between him and all the dangers of the world – a fire, a speeding car, a cannonball.
by Milena Pirnat, Winnipeg, Manitoba
I vividly remember the day my son, Bojan, was diagnosed with mild hemophilia A. I was standing in the middle of our newly rented suburban apartment in Winnipeg, just recently immigrated to Canada. My husband was on the phone asking: “Ah? Are you sure?” Pause ... sigh ... he put the phone down, sat, staring at the floor and couldn’t say a word. My world collapsed before me. As a physician I instantly knew, but still in shock, standing in the middle of the room, asking him: “Hemophilia, right?” The room became smaller and somehow air became heavier. We looked at each other totally numb and in disbelief.
All our struggles to survive the Bosnian war during the siege in Sarajevo, immigration and my recent diagnosis of a chronic condition were nothing compared to the feeling of loss after hearing our son’s diagnosis. Was it because we were both doctors unaware that he had an underlying condition, or the fact that I didn’t know I was a carrier, or that we were alone in that suburban apartment far away from our family and friends that day? I don’t know and I will never know but it hit us harder and deeper than my understanding goes. I went to my son’s room, I hugged him, I squished him tighter and longer than he wanted. He looked at me with his innocent smiling eyes. He had just turned six.
I was born and raised in Sarajevo, where my husband and I lived and worked. Bojan was born in January 1991 in a Sarajevo hospital, that same night when nurses were carefully listening to the radio when President Bush announced war against Iraq. Was there some kind of warning that one is not aware of, when your major life events collide with the brutality of world politics? I didn’t think much of it at the time! Even his big hematoma during birth didn’t raise any questions for us, nor my skin and eye bleed after I gave birth – I was so happy, I had become a mom!
At the time, I didn’t know I was a carrier. I just raised him that first year, enjoying that first spring: strolling him down the streets of Sarajevo like every other ordinary happy mom. Little did I know that real life events would unfold in front of my eyes as you watch a drama, with no option of a happy ending.
In 1992, Sarajevo was brutally attacked and we ended up being blocked in the city with a little baby. We survived, left Sarajevo and became refugees. I remember how happy I was that we had survived the siege of Sarajevo, hopeful that our lives would finally be restored and happy that we were alive and healthy. We had a big suitcase and hope for a new life in a new country. I never gave up. I thought: “We will survive all this chaos, we are lucky to be alive, we will repair, we will start life again and will continue to fight and live no matter what!”
But I wasn’t ready for this new twist of fate. When my son was diagnosed, all that pain became unbearable and it all resurfaced. Everything I knew about myself was thrown out of balance. All these wartime memories came to haunt me …
All these moments where I realized: ”Oh my God! We were in the war zone with a hemophiliac child!” What are the odds of surviving a war with a child with hemophilia? Some 10,000 civilians, including 1,500 children, were killed in Sarajevo during the 44-month-long siege, mostly by snipers and mortars fired from mountains surrounding the city. UNICEF reported that of the estimated 65,000 to 80,000 children in the city, at least 40 per cent had been directly shot at by snipers; 51 per cent had seen someone killed; 39 per cent had seen one or more family members killed; 19 per cent had witnessed a massacre; 48 per cent had their home occupied by someone else; 73 per cent had their home attacked or shelled; and 89 per cent had lived in underground shelters. We lived in a besieged city for 31 months with a toddler, without food, electricity and under constant shelling! And we were somehow spared? Survivor guilt mixed with hemophilia mom guilt stayed tangled in my brain for many years to haunt me more than I would ever want to admit.
From that initial shock of the diagnosis, all my experiences with hemophilia began to be blurry. We went to the hospital for the first time to meet his team of doctors, nurses and physiotherapists. We were new to the country, just here a year, and my language was just good enough to understand the diagnosis. The whole room was spinning around me while we sat in that small hospital room. I wasn’t really able to think, or breathe, or understand anything that was said that day. All that I saw in that moment in front of me was nurse coordinator Nora’s perfectly calm, dignified composure and her reserved smile and empathetic eyes. She went through explaining to us what we needed to know, gave us a big white binder, and assured us that we would be okay, secure and well taken car of. I went home that day in shock, confused but somehow reassured. She had said, “He is going to be okay.” From that moment I hung onto that phrase often: from the time when his muscle tore during a run in middle school, his first iliopsoas bleed, a broken wrist ...
Thanks to Nora (Schwetz), who has since retired, and Rose (Jacobson) – the fantastic Winnipeg nurse duo – and the medical team, we have slowly learned over the years how to manage hemophilia, step by step. Their calm and reassuring voices were everything to me in times of crisis, when I just needed to hear that my son would be okay. There are no words to describe how I feel about the team, the same way you can’t explain how secure you feel with your mother or your favourite aunt. I will never be able to express enough gratitude to the team that was caring for us 24 hours a day.
I often felt isolated raising my son. My father was across the ocean and my best friend lived in the U.S. Life was very busy, so between managing life and hemophilia there was never enough time. I was busy learning a new language, studying and working. Needless to say, the diagnosis needed a long time to sink in as well as learning to live with it. While living in a new country with new friends, far away from family, unable to find the job that I was trained to do, with all the twist and turns of hemophilia, I recognized my need to connect with a greater community – that is when “Hemophilia Mother” was born. I needed to talk to other moms and to help them overcome those first feelings of guilt so they could find support with someone who knew and could encourage them that it will get better with time. When my son was in his 20s, in the fall of 2010, I started a Facebook page called Hemophilia Mother. Its intention was to help support all women, mothers, daughters, and carriers in the bleeding disorder community.
I feel that education, sharing information, and emotional support are all necessary to empower women such as myself, to help prevent us from feeling alone and isolated by the condition. There is that sisterhood and web of connections that is necessary for women to express themselves, to share their struggles, and their victories too. I am excited that my Hemophilia Mother Facebook page (more than 3,040 members as of today) became of interest to an international community of women with bleeding disorders who find this kind of support useful in their everyday lives and health management. Social media is a great way for mothers to feel supported within our community and I believe that advocating for better psychosocial services for women is the next step in improving the lives of women with bleeding disorders.
I clearly remember the day my son was born. I looked into his eyes, and at that moment, I knew that I would forever put myself between him and all the dangers of the world – a fire, a speeding car, a cannonball. I had become a mother. I didn’t know it at the time, and I would not have dreamed that, but I was handed a greater, more honourable role – I became a Hemophilia Mother.
Bojan at 23 years old and myself, in Melbourne, Australia,
while attending the 2014 World Hemophilia Congress.
- November 2015