For one young patient who recently celebrated his first birthday in the Pediatric Intensive Care Unit at Jerusalem’s Shaare Zedek Medical Center, the occasion was something that most of his doctors never thought would come to pass. Born with Downs Syndrome, within months of his birth, Moshe (not his real name) was diagnosed with serious respiratory problems and as a result was failing to gain weight. He then contracted the dangerous adenovirus leading to his hospitalization.
Soon after his arrival at Shaare Zedek, Moshe was intubated and remained on respiratory support for 51 days. Dr. Sarit Shachrur Karni, Director of the PICU says that the medical teams were realistic about their patient’s chances. “The severity of his condition meant that we knew there was a good chance he wouldn’t survive and, if he did, the chances of any real quality of life were dim.”
Dr. Shachrur Karni, whose extensive experience in the PICU has seen her treat dozens of critically ill children over the years, says that, in almost all cases, a child who has been on assisted respiration for 51 days is likely to remain in such a condition for the duration – if he will survive at all. Most medical facilities would insert a tracheotomy and the boy would be transferred to a long-term health facility.
Adopting what his doctors refer to as “out of the box thinking,” the decision was made to try to wean Moshe off his breathing tube. “At the end of the day, our thinking was motivated by a desire to give this child a real chance at quality of life, which he would never have been able to experience with a tracheotomy.”
In addition to all of these medical complications, Moshe had a misshapen chest cavity meaning that lying on his back placed pressure on his lungs that would cause him to suffocate within minutes , unless prevented.
After considerable deliberations, the team decided to try a dramatic approach where the breathing tube would be removed and he would be positioned on his stomach. Under intensive monitoring during which nurses visually assessed his condition almost constantly for two days, he remained on his stomach while attached to a high flow, non-invasive ventilator called a Vapoderm.
After noticing considerable progress after the initial 48 hours, the team then turned the patient on his back and alternated his position between front and back every 12 hours applying different appropriate forms of ventilation. Over time, with careful monitoring and ongoing physiotherapy, the boy’s strength increased meaning he would be increasingly able to lie on his back.
On his back, Moshe can relate to his surroundings and his family members and nurses. The moment where he let out his first smile is something none of the medical staff will ever forget.
Today, he has spent more than 82 days at Shaare Zedek but his doctors are more optimistic than they could have ever imagined. Dr. Shachrur Karni says that she hopes that within six months he will be able to function completely without any form of assisted ventilation – well on the road to being as fully functioning as possible.
She says that she takes several lessons from Moshe’s case. “Most of all we have learned that you can’t be afraid to think creatively when it comes to making decisions about individual patients. We need to prepare ourselves to constantly question everything we have done until now if we feel confident that it can make our patient’s lives better.
But beyond just the important medical lessons, Dr. Shachrur Karni says that the medical team has learned a remarkable personal lesson as well.
“We truly feared there was no hope and we were constantly on the ready to call the family that the end was near. But cases like these, the results of which are so much better than we could have ever imagined, give us the hope and confidence to continue dedicating ourselves to our jobs and our patients.”
Fondly observing her patient, who she says looks stronger each and every day, Dr Shachrur Karni remarks “This is a great accomplishment and a true testament to the dedication of our entire staff “
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