When Julian was still living carefree in my heart, and I was walking with my almost three-year-old son, people would ask with sympathy, “Will it be a boy or a girl?” When I answered that it was a second son, the most common response I heard was, “Oh, but the most important thing is that it’s healthy!” And I already knew how important that thing wouldn’t happen for us.
Julian is a joyful and curious boy, almost two years old. Unfortunately, fate was stingy with him from the start, giving him only half a heart. In June 2016, we learned that our second son wouldn’t be like other children, like his older brother.
The mid-term scan was not a joyful, playful sight. It was an attempt to detect the red dots on the ultrasound monitor, signaling that blood was flowing into the left ventricle of the heart, and that it was working. Unfortunately, the flow was minimal, and the ventricle wasn’t working as it should.
All the abnormalities pointed to one thing: the most severe congenital heart defect, hypoplastic left heart syndrome (HLHS). A critical, incurable defect. Our world collapsed in a matter of minutes.
A very winding road lay before us, one that only we knew about. For our son to live, he required at least three stages of palliative surgical treatment. Julian had to be born in a hospital where a team of specialists would begin fighting for his life immediately after birth.
He spent only 15 minutes in my arms, then was placed in an incubator for long days and nights, hooked up to continuous infusions, wires, and cables. Doctors had to use medications to maintain fetal circulation so that Julian could survive until his first surgery.
During our pregnancy, we were fortunate that our doctor detected the heart defect early, for which we will be forever grateful. He was the first to give Julian a second life. Not all parents are so lucky.
Looking at our newborn, no one would ever have guessed he was terminally ill and would soon die without help. He was a large, robust, full-term boy, weighing 3930 grams, measuring 59 centimeters, and scored a full 10 on the Apgar scale. He barely fit in the incubator.
The birth of a child is a life-altering experience for the entire family. Shifting priorities and not enough hours in the day are probably what the average parent of a newborn experiences. It was similar for us, but on a more elevated level.
Julian’s performance declined with each passing day, his parameters were dropping, and his condition was classified as moderately severe. Every day, as visiting hours passed, I said goodbye to him, unsure if he would live to see the next day. The doctors offered no comfort; they simply told us how it was.
Finally, after almost a week, we were asked to sign the consent form for the first surgery. Without a doubt, it was one of the most difficult days of our lives. While signing the documents, we were informed of the risks and the difficulty of the surgery.
We knew once again that Julian was terminally ill, and the congenital HLHS defect could not be corrected or cured. His heart would never function like a healthy heart. The first stage of palliative treatment carries the highest mortality rate, and we didn’t know if he would survive.
After a difficult moment, we went to the hospital chaplain to ask for his Baptism. In the darkness, illuminated only by the heart monitors and small lights at the children’s stations, we prayed for Julian and reaffirmed our commitment through the familiar ceremony of receiving Holy Baptism. Moments later, we had to say farewell to our warrior and disappear behind the door.
The next day, zero hour struck. Julian was rushed to the operating room. Every second of waiting for information felt like an eternity. When we finally received the news that the operation was complete, we were told he had been brought out of general hypothermia and was stable, though connected to a specially designed device to maintain circulation.
Relief was long in coming. Julian now had to channel all his strength into the fight for life. The next few days were crucial. An open incubator, ventilator, drains, tubes, cables, pumps, syringes, and the intermittent beeping of the heart monitor alarm surrounded him.
We drew strength from our deepest reserves to support our warrior and his older brother, who tried to understand little. Each day, we drove the familiar route to the hospital, watching over Julian and squeezing every minute of our short visiting hours. We waited for him to start peeing, to tolerate food, to come off the ventilator, and to taper off his medication. Step by step, he moved forward.
After the first stage, Julian spent 26 days in the hospital. The day he went home was unforgettable. Our three and a half hearts were bursting with joy and pride.
Three months later, during a second checkup, we learned that the aortic stenosis had returned. Immediate cardiac catheterization was required. The balloon dilation was unsuccessful, so the doctors inserted a stent.
Months later, Julian returned for the third stage of surgery. Waiting in the intensive care unit for news about the operation was excruciating. When we finally saw him, swollen and attached to familiar equipment, our hearts shattered. He had grown, become stronger, but the battle was far from over.
Four days later, he was transferred to the cardiac surgery ward. Though he was with me 24/7, the postoperative period was very difficult. Oral medications were hard to tolerate, appetite was poor, and pumps and syringes restricted movement. Only intravenous painkillers brought relief.
After more than a week, treatment began to show effect, and Julian slowly returned to himself. Twenty days after surgery, he was cleared to go home. The reunion with his older brother brought tears of joy.
The third stage of palliative surgery remains essential for Julian’s survival. Without it, he cannot live. Professor Edward Malec from the Muenster Clinic has agreed to perform the operation. Thanks to generous donors, the full amount needed for surgery in Germany has been collected — approximately 170,000 złoty.
Julian’s treatment also involves medications, medical equipment, and specialist visits. After the third surgery, his blood clotting will need constant monitoring, requiring special devices and ongoing care. Travel, hotel accommodations, and perioperative expenses are additional challenges.
Julian will never have a healthy heart, but he wants to live and grow like other children. He may only have half a heart, but his will to fight and zest for life are more than whole. Every day he inspires us, reminding us that courage and hope can survive even the most difficult circumstances.