Fight Like Mateo: One Little Hero, Endless Strength
Written by ♥️Mom, Kristina
After years of trying to start our family, we were surprised with our miracle baby, Mateo.
During our 20-week anatomy scan, the doctors couldn’t see Mateo’s entire heart, but they assumed it was positional. To be safe, we went in for weekly ultrasounds from there until we were induced at 39 weeks. Mateo’s heart was never fully pictured on any of the ultrasounds, but he never moved to a position where it was possible to get a better look. Since everything else looked perfect for the entirety of the pregnancy, it was determined by the time that I was induced that Mateo’s heart was more than likely completely fine and that we had nothing to worry about.
What a surprise it was when Mateo was delivered on December 20th, 2022, by emergency c-section, resuscitated, and taken via med flight to the nearest children’s hospital a few hours away for his first heart procedure.
From this moment on, our lives have never been the same.
Currently, Mateo has had 7 heart catheterization procedures, a liver biopsy, a gtube placed for nutrition, and an open-heart surgery with full Pulmonary Artery Reconstruction.
While in the NICU for the first few months of his life, Mateo was diagnosed with a rare genetic condition called Alagille Syndrome. This syndrome affects mostly all of the organ systems – more specifically for Mateo, his eyes, ears, brain, skeletal system, liver, kidneys, arteries, and heart. These differences in his body have led to a multitude of diagnoses, including Tetralogy of Fallot with Severe Pulmonary Artery Stenosis, gastroparesis, feeding intolerance, butterfly vertebra, hyperbilirubinemia, global developmental delay, hyperkinetic movement disorder, chronically low oxygen levels, severe GERD, stroke leading to volume loss in the brain, and more. Mateo has a G-tube for supplemental nutrition because he cannot eat as much as he needs to sustain himself orally. He endures frequent hospital visits and admissions, along with his many appointments each week while outpatient.
Six months ago, we had to travel across the country to Lucile Packard Children’s Hospital at Stanford for Mateo to receive Pulmonary Artery Reconstruction and were in the hospital for 7 weeks. Unfortunately, a post-operative complication destroyed much of the work that had been done on his Pulmonary Arteries, and we almost lost him.
Despite all of this, Mateo is still here and is the sweetest, happiest boy. He enjoys singing, dancing, and loves his cats so much. His favorite food is pasta, and his favorite TV show is Mickey Mouse Clubhouse. He likes to sing the ABCs and play with Play-Doh. Mateo is so full of strength, bravery, and life.
Although these last 3 years have been the hardest of our lives, they have also been the happiest, the most filled with love, laughter, and growth in a way that we cannot explain to anyone who hasn’t found themselves in a similar situation. Every day is hard, and also so beautiful and wonderful, and we have learned to feel blessed in a way never before felt. Mateo has taught us what life is really about and how to be grateful for every single day.
One of our biggest fears about Mateo growing up is his mental health after continuing to go through so many challenges and traumas.
The Heart Hero Cape provided by the Heart Heroes Organization has been a great addition to our toolbox for making Mateo see how strong and brave he is. Giving something tangible to his journey, the thing that makes him “different,” is a truly wonderful way to remind him that different isn’t bad. Different is what makes this world go around, and it provides a positive to the hard things that he has to do.
We go back to Stanford later this month for a complete re-do of his Pulmonary Artery Reconstruction and the repair of his Tetralogy of Fallot. We would appreciate all of the thoughts and prayers that this surgery and recovery go as smoothly as possible!
