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Remember in my last email I mentioned that I used to be a Pediatrician? 

It was a wonderful experience to learn all the ways of treating children. I even had the chance to run the entire NICU at my last hospital.

 

I love babies, it’s always a wonder to see a tiny human being being born and developing so quickly.

 

Sure I have stories of despair and frustration at not having the right medications, life-saving procedures or even the specialist support for the really sick children.

 

But I have to tell you something. Healthcare is not always about a treatment or a cure.

Sometimes real healthcare is about easing someone’s suffering…

Our team had a strange case of a newborn who couldn’t breathe without a ventilator. The infant just couldn’t take a breath. He wasn’t sick, premature or had any physical anomaly we could see. As soon as the machine is shut for a few seconds, his O2 levels would start to fall and we have to turn the ventilator on again. 

 

We did all the relevant xrays, brain CT, blood tests, genetic tests and even metabolic screening that we had to send to another center. Nothing.

 

Our Head of Department, the Late Dr. Mahmud reached out to a school friend who worked in France about this case.

 

We used to have these medical second opinion sessions with various specialists before. Emailing scans, talking on the phones back and forth. If they were nearby, the specialist would come down to our NICU after they finished their regular duties.

 

This second opinion consultation was unusual because it took place over Skype (remember that app we had before there was Zoom?).

 

I had the first generation Ipad back then, we used it as a video portal to allow the overseas specialist Dr. Fawzi (in Paris) to view the child’s physical appearance, upload the reports and even have a history taking session with the parents, discussing any family history of genetic anomalies etc.

Within a few days of back and forth video sessions, Dr. Fawzi made a differential diagnosis. Something so unusual even our seniors had to go through our reference library for its true meaning….

 

Ondine’s Curse. Congenital Central Hypoventilation Syndrome or CCHS.

 

At birth the child was born without a functioning respiratory center in his brainstem.

He would not be able to breathe because there was no way to signal his body to take in oxygen.

 

Although a diagnosis was made. The prognosis is fatal. There is no cure or treatment for CCHS.

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Dr. Fawzi did something even more amazing. He didn’t have to but it was his professional duty. He had long video talks with the parents about their son’s incurable condition.

 

The parents were devout Christians, highly educated and understanding about the greater good.

 

After feeding little Oliver one last time. As he went off for his nap. We unplugged the ventilator.

 

He didn’t suffer. The parents did not fall into despair. We could not treat him, but we did not allow him to suffer unnecessarily.

 

Sometimes technology is not just about a purchase or a transaction. Sometimes it is about extending humanity across thousands of miles, to help little Oliver.

 

Your Humble Narrator,

Dr. Ismail Sayeed

Founder

ViOS, Inc

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