MARCH FOR BABIES: A MOTHER OF A MOVEMENT™
Brevard County
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Cocoa Riverfront Park
Stadium Parkway #101 , Melbourne, FL 32940
Date: Saturday, April 25, 2015 10:00 AM
Stadium Parkway #101 , Melbourne, FL 32940
Date: Saturday, April 25, 2015 10:00 AM
Our ambassador
Aran Hissam
Aran Hissam
Hi, my name is Aran Hissam and my story may be a little different than ambassadors from the past. First I would like to introduce you to my family. My husband and I have been married for 15 years this October and met when we were in high school.
Braden my oldest who now 7-- besides him being almost a ten pound baby (and no I did not have gestational diabetes) was a relatively easy pregnancy. Thanks to the March of Dimes and their 32 Point Newborn Screening that was done at his birth Braden was diagnosed with having Beta Thal ma see mia which is a condition that affects the way his hemoglobin is synthesized. As an individual he will go through life unaffected but this knowledge will be essential when he decides to have children because if his wife has the same condition without treatment it could be fatal.
We all know the importance of good prenatal health—taking Folic Acid, eating healthy, not smoking or drinking while pregnant—all things I made sure I did with all of my pregnancies. Ryan who is now 5 was born healthy thanks to much of the research that was done by March of Dives over the past 77 years and their commitment to having healthy pregnancies.
Brianna is my daughter and the reason I am sharing my story with you today. She was born on March 16, 2012 and passed away 15 hours after her birth. Brianna was diagnosed with a fatal fetal illness known as Fetal Hydrops when I was 18 weeks pregnant. We were initially told to terminate the pregnancy as Brianna would NEVER survive but my husband and I decided that was not our decision to make and we left Brianna’s journey with us in God’s hands.
We searched the country trying to find someone to help us and ended up with an amazing fetal surgeon out of Miami. To make a very long story short—I had three major fetal surgeries on Brianna trying to save her (as all of our tests came back negative for genetic conditions associated with her condition) but because of the design of the fetal shunt—they failed and it is believed she pulled 3 of the 4 out. In addition a devise known as a intraluminal tracheal occlusion was placed through Brianna’s mouth to promote her lung growth. Her lungs did grow… but not enough to sustain life.
I have stopped asking the what “ifs” and I’m now saying… what now. What can be done now to help other families have more options and more hope? We need to continue to push for continued research into prematurity and birth defects that the March of Dimes does so well so that all babies have a healthy start in life.
A quote that I life by is, “There is no footprint that doesn’t leave an imprint on the world.” Brianna has left an imprint on my heart and the hearts of many. Thank you to everyone here for your leadership and commitment for stronger, healthier babies.
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