Pulmonary Hypertension News Forums Forums BioNews Content 30 Days of PH 2021 30 Days of PH: My Son’s Diagnosis Sparked My Life-changing Journey

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

    Posted by jen-cueva on November 9, 2021 at 6:17 pm

    We are moving along, and I am inspired and deeply touched by all of our stories. Like this one, Day 8 is Zyana and her family’s story. A family who wanted to expand their daily, Zayna says, “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.”

    This path was when she was carrying her son, Ezrael. Baby 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 if he needed surgery. A week after he was born, his oxygen saturation dropped. He was put on oxygen, and they went home.

    But a month later, they went back for his cardiac catheterization and diagnosed pulmonary hypertension and a ventricular septal defect.

    But this mama keeps persevering for her son and her family. She continues to share what her son’s diagnosis has taught her.

    Zyana, my heart is deeply touched, and I can’t begin to imagine how life-altering this has been for not only you but your family.

    What takeaways did you all get from reading Zyana’s story? Isn’t baby Ezrael such a handsome little guy? Check out his big smile.

    Zyana’s story is on our Instagram! We have so many more stories for you! Go check it out and give us a follow so you don’t miss out on any #30DaysofPH stories.

    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.

    jen-cueva replied 2 years, 5 months ago 3 Members · 3 Replies
  • 3 Replies
  • Susi Steppins

    Member
    November 10, 2021 at 5:36 pm

    Hello Zyana.

    Oh my.

    My heart hurts for you.

    But what a strong mom you are.

    There are so many things on the horizon to treat PH.

    Many examples of happy endings.

    reading your words it is obvious that you have a lot of love and strength to give your son and that will get him very far.

     

  • Colleen

    Member
    November 10, 2021 at 5:52 pm

    I am always in awe of the parents caring for babies who have PH. I’m sure that comes with a whole other set of challenges. My son was 8 when he was diagnosed – old enough to verbally communicate his symptoms and concerns. The moms of little ones who have PH must have extra strong instincts that they rely on.

    I was so deeply touched by Zyana’s story!

  • jen-cueva

    Member
    November 11, 2021 at 5:05 pm

    Your words deeply touch my heart @s-steppins. So true; Zyana’s story is full of happy endings, but her strength is above anything I can imagine.

    I agree; @colleensteele, in nursing school, pediatrics was my least favorite rotation. It wasn’t because I did not love the babies. But more so, they could not verbalize what was wrong. This left me feeling like I was helpless to them. This is such an important point that parents of babies with PH struggle with.

    Kudos to our parents of all of our PH kids.

Log in to reply.