Here we were. In April 2023 our adventure began in the snow, in our beautiful new home in Finland. The house was wonderful. Our garden borders a wild forest, filled with the tallest trees I have ever seen. To this day, I look at them with love and admiration, watching how beautifully and steadfastly they carry each season. The only thing I needed to do to inside the house was paint. Everything else had already been fully renovated and was practically new. What a blessing for a single mother with an almost three year old daughter. So, I got to work, covering all the pink- and blue walls with calm and natural tones. Our belongings were still being shipped from the Netherlands so until they arrived, we managed with just one bed and a few plastic plates and cups. But we made it work, especially with the help of friends who came to lend a hand. A few months later in the heart of summer, Lumi started daycare. It was not easy at first because she did not understand the Finnish language. But slowly and surely she got the hang of it and her vocabulary expanded quickly. And what a difference in daycare compared to the Netherlands. Here the children go outside every day. They explore the forests, wander along the lakes, and are always served a warm and nutritious lunch. And what did I pay for this daycare? Just 35 euros (40 dollars) per month for full time care. Thanks to the clean air, the pure water and the constant time spent outdoors, Lumi began to flourish. Finally she had some colour in her cheeks. She felt more free, happier. Sometimes I could barely convince her to come back inside.
And we were so happy. I remember thinking to myself, what a wonderful decision this has been. How fortunate we are to have left all that hardship behind us. How grateful I am that we get to be here.
But little did I know…
The Beginning of the End
By now, nearly a year had passed. Our life was good. We had wonderful neighbours, Lumi had made lots of new friends, and I had quickly built a warm social network of my own. We also received frequent visitors from the Netherlands and whenever they would come to stay with us, it felt like a celebration. We all enjoyed those moments together so much. Lumi’s health was finally stable. A gluten free diet had become part of her life, but that was hardly a challenge here. Many people in Finland live with gluten and lactose intolerances, so eating out and grocery shopping was easy and worry free. Aside from the occasional virus, nothing seemed out of the ordinary. Things were finally going well.
And yet I kept asking the family doctors and the child health clinic the same question: why wasn’t Lumi growing? How was it possible that after two years she had only gone up one clothing size? How could it be that, at almost four years old, she was still wearing the same shoe size she had worn years earlier? My mother would sometimes say, “Well, Grandma had tiny feet too. She only wore a size 35 (US size 4.5). Maybe Lumi simply takes after her.” And yes, that was an explanation. Still, something continued to bother me. When I watched her play with the neighbour girls her age, they could run and jump for hours. They climbed the rocks in front of our house and leaped off them without a second thought. Lumi could not keep up for more than ten minutes. Then she would have to stop and catch her breath. Was it still the asthma diagnosis from the Netherlands? She had not needed her inhalers once since we moved to Finland, so I had assumed that chapter was behind us. That’s when I started consciously exercising with her. Maybe, I thought, she simply needed to improve her stamina. After all everyone, including the healthcare professionals here, insisted that there was absolutely nothing wrong. “She’s just a smaller girl,” they said. “She’s following her own growth curve. She’s simply not very athletic.” So we spent a lot of time walking through the forest. There was a trail that climbed steadily uphill and had a beautiful view of the ocean. But after only five minutes of walking, I would already have to pick her up and carry her. And I could feel and see, that it was not because she was lazy or unwilling. She simply could not do it.
On June 23, 2024, Lumi had her first ‘attack’.
It happened on her father’s birthday. He lives in the Netherlands, and we have always maintained a loving relationship with him. That morning, we had sent him a cheerful birthday video before heading out together. We drove to the charming historic town of Loviisa, about half an hour from our home. Lumi and I sat peacefully by the water, watching the boats drift past under the warm sunshine. Everything felt remarkably calm and serene, as if time itself had paused for a moment. When the restaurant opened for lunch, we went inside and enjoyed a lovely meal together. Before returning to the car, we quickly went to the restroom. And that was when it happened. Out of nowhere, Lumi began screaming. The sound cut straight through me. Her eyes rolled back, and she collapsed forward, hitting her head on the tile floor. Everything happened within seconds. I grabbed her and realized she was no longer breathing. Her face had turned a bluish grey colour. I recognized that colour from my work. It was the colour of death. I lifted her limp body into my arms, ran outside and screamed to the people around me to call emergency services. On the table where we had just been eating lunch, I began CPR. Over and over again I pleaded with her. “Lumi wake up, please Lumi wake up.”
And then I felt it. In that moment, I knew my child was going to die. It was a soul knowing. The following morning, after extensive testing at the children’s hospital, we received the diagnosis. The doctor came into the room and said bluntly; “Your child has restrictive cardiomyopathy, and she is expected to die within two years. The only thing that may prolong her life is a heart transplant. Do you have any questions?” The first words that came out of my mouth were: “I knew it.” For years I had witnessed her struggle. For years I had told doctors that something was wrong. And now my child was dying. Deep down, my mother’s intuition told me that a heart transplant would not save her. That it was already too late. More than anything, I just wanted to take her home. Back to our safe haven. Away from the hospital chaos and the people in white coats that she was so afraid of. But the hospital had other plans, and protocols had to be followed. And so we entered the most difficult and ultimately the final, hospital journey of Lumi’s life. After Lumi suffered a second attack, which she barely survived as well, everything moved at lightning speed. A cardiac catheterization was scheduled. During this procedure, doctors insert a catheter through the groin and guide it to the heart and lungs in order to measure pulmonary hypertension. They needed to determine exactly how high the pressure was and how severe the condition had become. This was most likely what had been causing her attacks. Or perhaps it was heart failure. The truth is, they never knew for certain what it was. I wanted so badly to spare her from that procedure. More pain. More fear. And more sadness. Once again having to stay strong for her while feeling completely shattered inside. But it had to be done. There was no way around it. The results would determine whether any further treatment, including a possible heart transplant, was still an option.
At the end of July, the day had finally arrived. We had been admitted to the hospital the day before, and for what felt like the hundredth time, Lumi had her blood drawn. They were checking her levels, but they also collected genetic material to investigate whether there might be an underlying genetic mutation. Her condition was incredibly rare. In Finland, only ten cases had ever been documented, and among all forms of cardiomyopathy worldwide, the restrictive type accounts for only about five percent. As a result, very little was known about the disease or how it progresses. Just another stroke of bad luck for us. Once the sedation started to take effect, I was allowed to accompany Lumi in the elevator as they took her to the operating room. The doctors had been very clear with me beforehand. There was a significant chance that she would die during the procedure. They told me I needed to prepare myself for the possibility that my child would not come back alive. Every parent can imagine what that feels like. Your little child lying in an enormous hospital bed. Heavily sedated and no longer fully understanding what is happening. Whispering those final words into her ear, reassuring her that everything will be okay, while not knowing whether you will ever see her alive again. My world fell apart the moment they took her from me and told me I could go no further. Tears streamed down my face as I looked at the most precious thing in my life, hoping and praying to God that she would survive. The hours that followed seemed endless. I spent much of the time on the phone with friends. Waiting. Hoping. Desperately searching for any news. Then the cardiologist appeared and the first thing she said was, “She’s still alive. The procedure went well.” Thank the Lord.
But the danger was not over yet. She could still die while waking up from the anaesthesia because the pressure in her lungs could suddenly increase. They had to wake her very carefully, slowly and gradually. Then we were finally allowed to see her. And once again, my heart broke. My sweet little girl was surrounded by the largest machines I had ever seen. Countless tubes, wires, and IV lines were connected to her tiny body. The moment she saw me, she cried out:
“Mama, I almost died. I almost died, Mama.”
To this day, these words haunt me. What did my precious child feel during those moments? What had she endured? Later, the cardiologist and the physician who had performed the catheterization came to our room to discuss the results. That was when they finally said it: Lumi was the most severe case they had ever seen. The pressure in her lungs was the highest they had ever measured, and there was nothing more they could do for her. They would arrange hospice care at home so that Lumi could die in the place she always wanted to be. This was it. I sat through countless conversations. There was an endless amount of paperwork and practical arrangements to make. I had to quickly learn about oxygen tanks and hospice medications such as morphine and midazolam. All of this for my four year old daughter. We were living in a nightmare.