This is a painful story to share, but it's a really important one for parents to read. For any parent, your worst nightmare is the death of your child. We don't even want to think about this. How does anyone recover from such a tragic event, let alone discover the strength to build and innovate so that your nightmare can be avoided by other parents? This is why this is such an important story for parents on so many levels.

In the past, I've touched on important lessons such as the fact that You Can't Control What Happens, But You Can Control How You Respond. This is a powerful story about Phyllis Rabinowitz and her husband Andrew who use the memory of their baby girl to fuel advocacy efforts for pediatric emergencies through their R Baby Foundation. Their work recently culminated in a collaboration with Massachusetts General Hospital to launch an upgrade to a mobile app that allows parents to quickly locate ERs that treat children.

ERs Vary Greatly in their Degree of Preparedness to Care for Children

Phyllis Rabinowitz and her husband Andrew were shaken when they took their baby daughter Rebecca to the ER nearly 11 years ago. Rebecca, born premature, was severely congested and having difficulty breathing.

Doctors insisted Rebecca had a common cold and dismissed her parents' pleas to have her re-admitted, declaring them neurotic and overprotective. Rebecca died eight days later. She was nine days old.

The couple later discovered their daughter had contracted an enteroviral infection, a potentially life-threatening illness in babies. They also learned that had her symptoms been treated, she might still be alive.

In an instant, the couple's world became consumed by grief. Anger, shock and severe depression settled in. It was in that moment the two decided to mobilize. Instead of succumbing to the numbing weight of tragedy in the days after their daughter's death, they turned to something else: research. They immersed themselves in information on pediatric emergency care and were stunned to learn that many ERs are not equipped to treat children.

They learned that pediatric healthcare is underfunded and ERs vary greatly in their degree of preparedness to care for children. Not all doctors know how babies exhibit symptoms differently than adults, and many parents are in the dark about it all. For Phyllis, it was another moment of profound disbelief, as she thought, "What? This could happen again?"

Fueled by emotions and a greater sense of responsibility, the couple began to channel their energy into forming an entity that could raise awareness and advocate for change. Days after Rebecca's death, Andrew had formed a board and, within months, they were incorporated. The R Baby Foundation was born.

Access Critical Information on Pediatric Emergency Care

R Baby is the first and only not-for-profit foundation uniquely focused on saving babies' lives through improving pediatric emergency care by supporting life-saving pediatric training, education, research, treatment and equipment. It has raised over $10 million and has funded programs improving the healthcare for millions of children.

In their most recent feat, R Baby collaborated with the Emergency Medicine Network at Massachusetts General Hospital to launch an upgrade of the EMNet findERnow™ mobile app, equipping it with information on pediatric emergency care. The enhanced app helps parents and caregivers quickly identify ERs more likely to be prepared to treat children. With the touch of a screen, findERnow shows users the distance and directions from their current location to the closest ERs, using EMNet's proprietary ER database, the most complete and accurate in the nation.

With a $0.99 subscription, users can access critical information on pediatric emergency care, including the percentage of annual visits from children, whether the hospital has a verified pediatric trauma or pediatric burn center, and whether the ER has a separate pediatric area. The app also shows if the ER has pediatric coordinators, whose presence research has shown increases the likelihood of having the latest pediatric training, equipment and supplies.

Phyllis says the app has made it easier for parents of children with allergies, disabilities and other medical conditions to travel, affording a peace of mind they didn't have before. It has also triggered a dialog on the varied levels of ER preparedness, with parents and caregivers now demanding more transparency from hospitals regarding their capabilities.

Turning Pain into Empowerment

We often associate our plunge into entrepreneurial labor with that storied sweat equity, punctuated by moments of isolation and self-chastising over inevitable mistakes. We lament the occasional drain of confidence and curse an irrational level of persistence as we mull over our competitive landscape and often over-saturated industry. We learn to adjust expectations when growth falters and rejoice when we reach new milestones.

But the stakes are much different for Phyllis and her husband. Their marketing strategies must succeed to give a voice to babies and children who need urgent care. findERnow is designed to save lives. Connecting to their audience isn't just rewarding, it's vital. A lack of competition is definitively bad, but their motivation is strong and enduring.

In our moments of deepest doubts, let's remember how one couple found strength to build at a time of unspeakable loss, to turn pain into empowerment. We don't always know what we have within, but we see from the experience of others that fortitude can sometimes surprise us.

Let's let Phyllis and Andrew show us the power of unshakeable resolve, and let the memory of a little girl named Rebecca be motivation for us all.

Published on: May 1, 2017