Sharing an experience can be very helpful, especially in trying times. As our stories are gathered they will be posted here.
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I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this: |
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 Born: August 2005 Heart condition: Hypoplastic Right Ventricle, VSD, Pulmonary Stenosis, history of arrhythmia. It was April of 2005... After having two back-to-back miscarriages, we found ourselves getting a sonogram at a maternal care specialist with our third pregnancy, just as a precaution. We were so excited to learn that we were going to have a boy! However, after several hours in the office, we began to sense that something was wrong… |
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 Born: June 1993 Heart condition: Truncus Arteriosus Emily was born in 1993 in Cedar Rapids, Iowa. We were unaware of Emily's heart condition until 5 days after her birth. Her nurse in the NICU noticed from her chest x ray that her heart looked “boot shaped”. She called for a cardiology consult and within an hour, our lives were changed drastically… |
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 Born: May 2004 Heart condition: Total Anomalous Pulmonary Venous Return (TAPVR)
The day of the scheduled C-section arrived and I was so excited! We went into the OR about 8am and Daddy watched the WHOLE THING! MATTHEW ISAIAH came into at 8:54am! When I woke up in recovery room all was well in my life! I had just had a beautiful baby boy! Then a nurse walks in and stated, "WHERE IS MR GONZALEZ? YOUR SON HAS A HEART DEFECT AND HE HAS LUNG DAMAGE AND WE NEED TO TRANSFER YOUR BABY TO ANOTHER HOSPITAL"… |
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 Born: August 2007
Heart condition: Hypoplastic Left Heart Syndrome Alejandro was born at 12:19 pm weighing in at 7 pounds, 3 ounces. We held him for about an hour before they took him off to the nursery for his bath. After about a few hours, I wanted to see my baby. I called the nursery where they informed me he was breathing too rapidly; therefore, they were going to observe him and would be taking an X-ray shortly per his pediatrician instructions. I wasn't worried… |
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Born: April 2003 Heart condition: Pulmonary Atresia Our youngest child Mia Aurora was born on April 2003 with a heart defect called Pulmonary Atresia. It was the biggest shock in our life. I don't know how we overcame the shocking few months after she was born but somehow with God's help here I am retelling this story. |
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 Born: November 2006
Heart condition: Tetrology of Fallot with a Pulmonary Artery Atresia and Ventricular Septal Defect Our sweet Daniel was born on November 2006, and we could not have been happier. He was our third child and only boy; the completion of our happy family. Daniel was the sweet little man that we had dreamt of for years.
I must admit that my dream child looked a bit blue when he was born; however, I was assured several times by our delivery nurse that “babies can look a bit like this when they are born.” |
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 Born: July 2008
Heart condition: Transposition of the Greater Arteries
I wanted to write to add my son's story and am regretful that I had not done it sooner. But as with the purpose of this website, I would like to provide information for other parents and hope.
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