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By submitting your story and/or photo to ACHA, you are giving permission for your story and/or photo to be displayed on our website. The stories on this page are the property of the individual who has provided it. Stories may be edited for content. The experiences and opinions expressed are solely those of the individual, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied within these stories.

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Robyn & Jax

Feb 6

Posted by: ACHA
2/6/2013 2:03 PM  RssIcon

My son, Jax and his twin were born in August. While Jax’s brother is medically perfect, Jax was diagnosed with a genetic disorder called Cat-Eye Syndrome or trisomy 22, and tetralogy of Fallot in my pregnancy. When the boys were born, Jax was transferred to the NICU at Children's National Medical Center.

We found out more about his condition during his stay. His heart is on the opposite side of his chest. His intestines are reversed. He may have vision issues. He may have cognitive delays. He was born with tetralogy of Fallot with pulmonary stenosis – which is a serious congenital heart defect requiring early open heart surgery to repair five serious birth defects.

After three weeks in the NICU, Jax was sent home to grow and develop until he was big enough to have surgery. He was blue and listless and his blood oxygen levels were very low. We took him to countless medical appointments -- for his heart, but also for the other medical issues. And we cared for his twin and their 2 year old sister. On November 22, 2011, Jax had successful open heart surgery, repairing a more severely defected than expected heart. Immediately after his surgery, he was pink as his heart oxygenated his blood, and he was more responsive. He spent 10 days in recovery.

Now his heart is strong and his oxygen saturation levels are amazing. Last week, Jax had a cardiac catheterization to repair stenosis in a valve in his heart. It was unsuccessful, and he faces additional open heart surgery in the upcoming months. Jax is thriving and amazing, busy and loving. Our Jaxie is a fighter and we are so proud of him.

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