March of this year brought the arrival of our beloved son, Mateusz—a day we had awaited with hope, prayers, and countless dreams. From the very beginning, we knew life had set before him one of the toughest battles imaginable. Before he even took his first breath, prenatal tests revealed a complex and critical heart condition: evolutionary hypoplastic left heart syndrome, critical aortic stenosis with reduced dimensions, and a restrictive foramen ovale. We held onto hope, but deep down, we understood that our journey would be defined by courage, resilience, and love.
Mateusz came into the world at just 35 weeks, by cesarean section, weighing only 1,970 grams. Because of oligohydramnios and fetal growth restriction, he was immediately transferred to the Children’s Health Center and admitted to the neonatal intensive care unit. The fragile lines of his tiny body, the soft rhythm of his heart, and the quiet beeps of machines became the backdrop of our days and nights. Every monitor, every infusion, every movement of his chest was a reminder of both his vulnerability and his remarkable will to survive.
The first weeks of Mateusz’s life were marked by a series of complex medical interventions. His premature birth and low birth weight complicated an already delicate situation, necessitating urgent cardiac surgery. Blood flooding his lungs meant banding both pulmonary arteries, followed days later by a cardiac catheterization to widen the restrictive foramen ovale. Each time he was wheeled away for surgery, our hearts shook with fear. Waiting, praying, and holding our breath became our reality. When he returned, motionless under layers of tubes and monitors, we trembled—but we never stopped believing in his strength.
Early April brought a terrifying turn. Mateusz suffered hypoxia and cardiac arrest. In those moments, fear gripped every fiber of our being, yet we clung to hope as doctors administered a last-ditch treatment to save his fragile heart. The procedures that followed were grueling, testing not only his small body but also our faith and endurance. He was no longer a candidate for the planned surgery to modify his heart into a single-ventricle system. Yet, after days of struggle, his heart began to recover slowly, though his overall condition demanded immediate surgical intervention.
The surgery that followed lasted eleven grueling hours. When our son returned to us, he was in critical condition—unable to breathe on his own, supported by extracorporeal membrane oxygenation (ECMO), his tiny body clinging to life by sheer will. Two days later, he developed kidney failure, requiring dialysis. The weight of helplessness threatened to crush us, but Mateusz’s indomitable spirit shone through every line on the monitor, every small movement, every heartbeat. He was a warrior from the very start, and we refused to let despair define our story.
By the end of April, small rays of hope began to pierce the darkness. Mateusz’s heart was beating better, and his kidneys resumed normal function, no longer requiring dialysis. Three days ago, he underwent cardiac catheterization and a right pulmonary artery bypass grafting. Despite these successes, he remains on a ventilator, fed through a feeding tube, and continues to struggle with oxygen saturation and heart rate fluctuations. We’ve faced two brain hemorrhages as well—thankfully minor, but their long-term impact will only reveal itself with time.
The road ahead remains long and uncertain. Mateusz will need at least two more heart surgeries, followed by specialized rehabilitation. He requires professional care, advanced medical equipment, breathing monitors, and ongoing specialist consultations. Each visit, each procedure, each step toward recovery comes with enormous expenses, and as parents, the weight of these realities is immense. Yet, our commitment is unwavering. Our love for Mateusz is limitless, and we will fight for him with every ounce of strength we possess.
With no other choice, we humbly ask for your help. Support from people of good will will give our little warrior a chance to grow, thrive, and one day live the life that began in our dreams. Mateusz is our son, our hope, and our heart, and with your kindness, he can continue to fight, continue to shine, and continue to teach us all about courage, resilience, and the power of love.
Beata and Andrzej, Mateusz’s parents
Jaxon’s Journey: A Christmas of Hope and Resilience.2808
This Christmas will be unlike any other for Sophia and her family. While most families are gathering together to celebrate with festive meals and laughter, Sophia and her partner James will be spending the holiday in a hospital room, two hours away from home, at St Michael’s Neonatal Intensive Care Unit (NICU). Their son Jaxon, born with a rare birth defect, is fighting for his life, but thanks to the dedicated NICU team, Sophia remains hopeful for a brighter future.
“My partner James and I won’t be having our usual Christmas roast dinner and party with family this year,” Sophia shares. “Instead, we’ll be here, by Jaxon’s side in the NICU. We’ve been here for over a month, but I know he’s in the best hands possible.” The family’s world has been turned upside down since Jaxon’s birth, but they draw strength from their love for their son and the support they’ve received.
Sophia had always sensed that something wasn’t right during her pregnancy, but when she went for her 12-week scan, her worst fears were confirmed. “They suspected Jaxon had a condition called gastroschisis,” she says, her voice heavy with emotion. Gastroschisis is a birth defect where the intestines are located outside the baby’s body. “I was devastated. I had no idea what would happen to him in the future, and the thought of him suffering was unbearable.”
Despite the overwhelming worry, the family’s journey took another difficult turn. Jaxon needed specialized care right after birth, care that couldn’t be provided at their local hospital. They were forced to travel to Bristol, far from home. “It was a stressful situation,” Sophia recalls. “Not only was I carrying my baby who wasn’t well, but we were now facing the added challenge of being miles away from home.”
At 37 weeks, Sophia was induced, and the birth seemed to go as planned. However, when it came time to hold her baby for the first time, the moment she had been dreaming of, things took a different turn. “Instead of holding him, Jaxon briefly grasped my finger, and then, in an instant, he was rushed away to St Michael’s,” she remembers, still shaken by the memory. “It was the most overwhelming experience. I couldn’t understand why I wasn’t able to hold him and comfort him.”
When Jaxon arrived at the NICU, the severity of his condition became clear. The hole in his abdomen, where his intestines had escaped, was too small to allow them to be placed back in at once. For the next six days, Jaxon’s intestines were kept in a special bag and gradually eased back in, step by step. “Watching him during those days was the hardest thing I’ve ever done,” Sophia says, her voice cracking. “He was sedated and ventilated, and he looked so limp and lifeless. I didn’t hear him cry until he was 11 days old. It felt like he was on mute. All I wanted to do was pick him up and cuddle him.”
The emotional toll was unbearable, but Sophia remained strong for her son. “I just kept praying and hoping that he would get better, that one day we would get to take him home.”
Today, Jaxon’s condition has improved. The hole in his abdomen has healed, and he is doing much better. However, he still faces a long road ahead, including surgery to correct a blockage in his intestines. “We’re not out of the woods yet, but every day he gets stronger, and that gives us hope,” Sophia says with a smile.
This Christmas, though they won’t be home, the family is grateful for the support they have received, especially for their daughter Isla, who has been staying with them at Cots for Tots House. “It means so much to us that we can stay together as a family, even though we’re so far from home,” Sophia shares. “Isla is missing out on all the usual holiday excitement, but she knows Jaxon is where he needs to be. She wants nothing more than to be here with us and her baby brother.”
Sophia and James have been overwhelmed by the care and kindness shown to them by the NICU staff at St Michael’s Hospital. “The doctors and nurses have been amazing. They’ve gone above and beyond to make sure we’re supported,” Sophia says gratefully. “I truly feel hopeful with them by our side. I know that soon enough, we’ll be able to take Jaxon home, and that will be the best belated Christmas gift ever.”
Jaxon’s journey is far from over, but Sophia and her family are filled with hope for the future. They know that with each passing day, their little warrior is one step closer to being the healthy, happy child they’ve dreamed of. “We’re so thankful for every moment we have with Jaxon, and we’ll keep fighting for him every step of the way,” Sophia says. “This Christmas may be different, but the love and strength we have as a family will carry us through.”
