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Aditya’s Story 2018-01-03T21:42:02+00:00

Aditya’s Story

Aditya Ankit Patel was our beautiful baby boy.  He was loved from the very moment that we found out we were expecting.  Even though he is not with us now, the love for him continues to grow in our hearts and the hearts of everyone that knew him. 

We started to think like parents the moment we found out we were expecting; reading and learning everything about pregnancy and childbirth that we could get our hands on and planning for our son’s arrival.  Prior to every visit to the OBGYN we would prepare questions, learn about that particular milestone and then follow the doctor’s advice.  As it turned out, the pregnancy was completely normal and uneventful.  All of the tests and ultrasounds went well and we welcomed our sweet son on January 20, 2016.  He was a big boy at 7lbs 6oz, and 19 inches tall.  In the minutes after delivery, we got to see him and hold him in our arms and those happy moments are ones that we will never forget. Our hearts were filled with so much excitement and joy, and we could not take our eyes off of him.  He was the cutest little person we had ever seen; we were simply in awe.

We thought we knew all there was to know about the various conditions that babies could potentially be born with, but nothing could have prepared us for what happened on the day Aditya was born.  A few hours after his birth, he turned blue in the nursery and was moved to the NICU.  We were told that he had some form of a heart defect, though the doctors did not know exactly what was wrong with him. Aditya needed to undergo additional tests and was moved from Englewood Hospital in NJ, to Mount Sinai hospital in New York City and held under observation.  During his stay at Mount Sinai, the cardiologists told us that Aditya had Aortic Stenosis and potentially a Coarctation of the Aorta.  He needed further testing and follow-ups, but he was stable enough to be released from the hospital and was reunited with his Momma after two days.  In those two days, the cardiologists had ruled out Coarctation of the Aorta. 

We finally brought Aditya home and got to experience everything that new parents get to experience.  His momma cared for her precious little boy so diligently and ensured he was happy, fed, clean and entertained.  His papa ran to him as soon as he got home from work to play with him and take over some of the diaper duties.  Late night feedings, which were at first difficult to adjust to, became routine and easy.  He had regular play times, cuddle times, bath times and reading times, all of which he loved very much!  He was a happy little baby and rarely cried or was fussy.  Due to his undiagnosed heart condition, we made sure to take all precautions to prevent him from getting sick.  During the time he was home, he did not show any common symptoms of a heart defect.  We followed his progress weekly, touted each accomplishment and created a lifetime of memories with Aditya.   We will never forget his beautiful smile and big bright eyes.

Although Aditya’s diagnosis did not come until much later, the cardiologists were looking further into his Aortic and Pulmonary Stenosis which were confirmed during his first follow up echocardiogram visit.  Leading up to his visits at Mount Sinai for tests and consultation, we prepared questions for the doctors so we could be informed about his condition.  We began educating ourselves on the various forms of heart defects, their prevalence and their treatments.  We learned that some diagnoses and treatment plans can take some time and can only be made after regular and frequent monitoring of the condition.

In March of 2016, Aditya underwent a diagnostic catheterization procedure and the doctors formulated a treatment plan a few hours afterwards which included open heart surgery.  We were relieved that there was a planned course of action.  Sadly, Aditya went into cardiac arrest that evening and passed away two days later, prior to his scheduled surgery.  He was subsequently diagnosed with Supravalvar Aortic Stenosis (SVAS) which was caused by a mutation in his Elastin gene.  Although we knew that he had a heart defect from the day of his birth, his loss still came as a tremendous shock. 

The time we had with Aditya was the most amazing time of our lives.  Aditya is the Sanskrit word for “the sun” and his light continues to brighten our lives. 

– Jignasa and Ankit.