Sai Shah

Sai’s journey started off with a lot of heartache, stress & worry but his life continues forward with a lot of hope, love, laughter & amazement.  In October 2016 at a standard 12-week pregnancy check-up that included an ultrasound and a quick meeting with the OBGYN we learned that something might be wrong with Sai’s heart.  It was too early to tell what, as the heart was not developed all the way but we needed to meet with a Cardiologist within the next month and have an Echocardiogram (Echo) performed.  Little did we know how our lives would be changed forever after the meeting with the Cardiologist.

From week 17 till about week 32 we had a fetal echo done about every 3 weeks.  Sai’s diagnosis & prognosis got progressively worse at each appointment. We started with a diagnosis of Tricuspid Stenosis but quickly moved to Hypoplastic Right Heart Syndrome (HRHS).  This diagnosis was devastating and took us a while to absorb and understand. This was all very new to us. We started researching HRHS, talked to doctors and talked with other parents who had gone through the three surgeries that would be required and made peace with the diagnosis & the prognosis.  We felt relatively prepared, but we would become overwhelmed after our 4th fetal Echo appointment.      

At our 4th Fetal Cardiology appointment our tech was taking a lot of scans and then the Cardiologist came in and took even more scans for what seemed like hours.  We could tell something was not right, but we were not prepared for the news we got. At that appointment and the follow up appointment a week later the Cardiologists confirmed that Sai’s diagnosis had progressed from just Hypoplastic Right Heart Syndrome to also include an Enlarged Left Atrium, an Enlarged Left Ventricle, Mitral Valve Complications, Arrhythmia, Coarctation of the Aorta, and slight Fluid Buildup around his heart.  We were delivered the news that Sai had a poor prognosis and due to all the complications with both sides of his heart, he would likely not survive to birth. If he made it to term the chances of his surviving were poor even if the doctors could perform the 1st of what would likely be many surgeries.   We were not prepared for that news.

It was December, 11 days before Christmas and we had to prepare for the very real likelihood that Sai was not going to make it.  We were emotionally drained and exhausted, neither the doctors or us could do anything but wait. We researched everything we could over Christmas break.  We spent hours researching Sai’s diagnosis looking for any articles or data to show us what would happen. There was essentially nothing. We just knew Sai was in a very complicated and critical situation with a poor prognosis.  

After getting second opinions, meeting with surgical teams, cardiologists, child life specialists, etc we figured out that Sai was not going to give up that easy.  As we got into the middle of January & beginning of February Sai’s arrhythmia stopped, the fluid around his heart was no longer there. At our last Fetal Echo appointment in Feb we were told positive news for the 1st time in months, while we were still in a critical situation, Sai’s heart was fixing itself.  As one of the Surgeons put it, if he is still fighting we must fight for him!

The day Sai was born and the following 2 weeks in the NICU were difficult & nerve racking.  The Doctor’s were monitoring and trying to figure out a treatment plan. They finally said that they would not do surgery immediately but wait.  Sai had two main issues the doctors were concerned about, Pulmonary Hypertension & Severe Mitral Valve Regurgitation but we could take him home with a regiment of medicines, monitoring and Doctors’ appointments.  This was amazing news and somewhat scary. Sai did have to be admitted back to the PICU two weeks after we had been released from the NICU for reasons not related to his heart issues but since then we have been blessed to not have another stay in the hospital.  

Fast forward to today, we have gone from having Cardiology appointments once every 2 weeks to hitting our 1st milestone of not having to go back for a full year.  In addition, Sai “graduated” from Neurology and the NICU clinic does not need to see us for a full year.  

Today if you were to look at Sai you would not be able to tell the journey he has gone through or what he may have to face in the future.  He is a headstrong, vibrant, inquisitive, curious and a naughty toddler with energy that never stops. We are certain Sai does not think anything is wrong with his heart.  We never thought we would be here, we never imagined we would be able to celebrate his second birthday.

Due to the rare structure & function of his heart the doctors are not able to predict what’s next. Currently, his future looks very bright. While the Doctors believe there is a good likelihood that he will need surgical intervention sometime in the future they cannot provide us any timeline.  We celebrate this as a win, taking it a day at a time and Doctor’s appointment at a time. We hope that Sai continues to beat the odds and amaze the Doctors. We hope that Doctors can learn something from Sai that will help another child who is born with congenital heart disease.  

As we go through this journey filled with a lot of ups and downs our hope is that Sai’s story will help give other CHD parents strength to keep pushing forward and keep fighting.  We hope that Sai helps Doctors understand heart defects better so that there is a brighter future for all kids and adults with congenital heart disease.

Read other features about Sai and his family: Father’s Day – June 2018

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