30 Days of PH: My Son’s Diagnosis Sparked My Life-changing Journey

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by BNS Staff |

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Photo courtesy of Zyana Perez

Day 8 of 30

This is Zyana Perez’s (@zyanaperez) story:

For years, our family of three wanted to expand to four. We never could decide the “right time” to have a new baby. Between moving, finishing college, and many other things, we figured it would happen when it was meant to happen. But I would never have imagined that this would be the path we would end up on.

Ezrael was born on Dec. 1, 2020. He was IUGR (intrauterine growth restricted) in the womb, was known to have coarctation of the aorta, and was born at a children’s hospital in case he needed surgery. A week after he was born, his oxygen saturations dropped. He was put on oxygen, and we went home.

A month later, we went back for his cardiac catheterization, and got the diagnosis: pulmonary hypertension, and a ventricular septal defect. I went down the Google rabbit hole trying to figure out what this meant and ended up making things worse for myself. I felt a ton of heartbreak and grief. I was scared — scared for what this could mean for our baby.

After many months of smiles, tears, two procedures, and two surgeries, I look back and am thankful — thankful for our doctors, our family, and thankful to God.

My son’s diagnosis doesn’t define who he is or who I am as a mother. His disease has taught me patience; it has taught me that the little things I used to worry about don’t matter. It’s taught me to live in the moment and to be grateful for every second with the people I love. And now as we approach our son’s first birthday, I am so proud of how strong and resilient my little boy is. I am proud of myself for holding it together for him.

Most days I feel like this is all a dream. And while one day we hope to overcome this disease and our lives may be “normal” again, I will NEVER forget this journey and everything that it has taught me. My son is my hero, and I wouldn’t trade him for the world.

Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.