Learning From Mom's Emergency Room Tragedy

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Photos courtesy of Phyllis Rabinowitz

Taking your baby to the hospital is scary for any parent but it’s also tough to know when to bring him in — you don’t want to overreact, but you’re also not sure what symptoms warrant calling the pediatrician versus an ambulance. 

Enter New Jersey resident Phyllis Rabinowitz. She wants all parents to feel comfortable advocating for their children in medical emergencies and for kids to receive the best possible treatment. That’s why she and her husband founded the R Baby Foundation, the first and only non-profit focused on improving pediatric emergency room care. But before becoming Superwoman, Rabinowitz was first a new mother.

“When our daughter Rebecca was born, she was just perfect. Olive skin, brown eyes. It was the best day of our lives,” Rabinowitz tells Yahoo Parenting. “We were so happy to take her home, but within the first day she developed some concerning symptoms.” The couple noticed that Rebecca was wheezing and had difficulty breathing, in addition to acting lethargic and experiencing loss of appetite. “We knew in our gut something was wrong,” she says. So they called their pediatrician, who suggested they take Rebecca to the hospital. 

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After listening to Rebecca’s lungs and performing other basic triage care, the emergency room doctor, not a pediatrician, diagnosed a common cold. “We begged her to do blood work or a cat scan but she made us feel like we were being neurotic,” Rabinowitz says. The doctor that treated Rebecca was a regular emergency room MD, not a pediatric emergency doctor — and the latter has an additional six years of training. “A lot of parents don’t know this crucial difference,” says Rabinowitz. 

Rebecca passed away the following day. 

An autopsy revealed she had somehow gotten a strain of enterovirus, a term with which the American public is becoming increasingly more familiar; since August, the Centers for Disease Control (CDC) confirmed more than 1,000 cases of enterovirus in 47 states, most of them children with pre-existing breathing conditions such as asthma.

To ensure a better outcome for other families, R Baby works with medical staff to run training scenarios with infant mannequins that “breathe” and “cry.” It also aims to push a bill in Congress to properly define a pediatric emergency department. While there are strict guidelines for defining itself a “Children’s Hospital,” any facility can throw up a sign claiming to have a “Pediatric emergency room” without having smaller medical equipment and other necessities. “Rebecca would have had a different outcome if I’d known then what I know now,” Rabinowitz says.

She says parents can advocate for their babies by insisting that a pediatric emergency room doctor examine their babies, not just an emergency room doctor. If one isn’t working at the time, have them paged. And keep pushing for additional testing if needed. Also: Don’t be afraid to ask for a second opinion. 

Not sure whether your baby needs to go to the ER? Marc Auerbach, MD, assistant professor of pediatrics at Yale-New Haven Children’s Hospital, urges mothers to first rely on their instincts. “Moms know best,” he tells Yahoo Parenting. He also suggests researching the best local hospital before an emergency arises, and involving your pediatrician before making the trip. 

Here are five signs you should bring your baby to the emergency room: 

Your baby develops a high temperature: First off, any baby under the age of one month who develops a fever should be taken to the ER right away. With older babies, make a judgment call — according to Auerbach, if your baby’s temperature reaches 100.4, call the pediatrician. However, if his fever is also accompanied by other symptoms such as dehydration (extreme thirst, little to no urination, dry skin) or respiratory issues, bring him to the ER. 

Your baby’s skin bruises:  “If they don’t cruise, they shouldn’t bruise,” says Auerbach. Meaning, all toddlers get bumps, but before a baby is walking, bruises on the body could indicate a blood clotting condition. 

Your baby acts ‘different:’ “This one is hard to clarify in newborns,” says Auerbach. “But parents learn to differentiate between tired and hungry cries and will notice if their baby suddenly makes different sounds. Or, if you normally have a happy, perky baby but suddenly he’s lethargic and disengaged, that could be a sign that something is wrong.”

Your baby’s breathing is irregular: Babies often breathe at different rates, but breath should never “belly-dance” — when ribs stick out during an inhale. Babies should also not wheeze loudly. “I get concerned if I see the nostrils flaring, or over 60 breaths per minute,” says Auerbach. 

Your baby has feeding issues: When it comes to either the breast or bottle, watch for sudden difficulty in sucking, long-term loss of appetite, and vomiting (especially if it’s yellow or green).