With an open heart: Madeline's Medical journey.

My Daughter's Journey with AV Canal Heart Defect and Lung Surgery

As a mother, I never imagined that my sweet little 4-month-old daughter, Madeline, would have to undergo open heart surgery. But that's exactly what happened when she was diagnosed with AV canal heart defect, a congenital heart defect that affects approximately 50% of babies with Down syndrome.

AV canal heart defect, also known as endocardial cushion defect, is a condition in which there is a hole in the wall separating the two upper chambers of the heart. This hole allows blood to flow between the two chambers and can lead to a dangerous increase in pressure on the heart and lungs.

When Madeline was diagnosed with AV canal heart defect, we were devastated. We had so many questions and concerns about what this would mean for our little girl. The doctors explained that surgery was the only option to repair the defect and improve Madeline's quality of life.

Two weeks after her open heart surgery, Madeline had to undergo lung surgery to repair a collapsed lung. The recovery was slow and challenging, as Madeline had trouble coming off the ventilator. But after two weeks of being in the hospital, we were finally able to bring her home.

Unfortunately, Madeline's health took a turn for the worse and she went into congestive heart failure. The doctors informed us that she would need another open heart surgery to save her life. This was an incredibly scary time for our family, as we were worried about Madeline's survival.

Thankfully, the second open heart surgery was successful and Madeline's heart was once again functioning properly. The doctors had warned us that there was a 75% chance that Madeline would need artificial valves, but thankfully, that was not the case.

Today, Madeline is a happy and healthy little girl. She is thriving and living a full life, despite the challenges she faced early on. I am so grateful for the excellent care she received from her medical team and for the grace of God, which saw her through.

In conclusion, as a mother, I know all too well the fear and anxiety that comes with a child's medical journey. But I also know the joy and gratitude that come with seeing your child recover and live a healthy life. I hope this story of Madeline's journey will give hope and encouragement to other families facing similar challenges.

If you have questions or would like to share your story with me, please email me @

findingthepieces25@gmail.com

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