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Turning Personal Tragedy into Triumph

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This brave mom decided to give back to other moms after her sweet daughter died at only 8 days old.

rebecca ava rabinowitz

Kimberly Seals Allers: Phyllis Rabinowitz knows a mother's worst nightmare. On July 21, 2006, her daughter, Rebecca Ava, died at 8 days old after being misdiagnosed in the emergency room. The trauma began with the ER experience. "The doctor was so dismissive," Phyllis recalls. "He was like, 'This is just a common cold. I've seen children for twenty years. I've got to get to a real emergency down the hall ....' No matter what my husband and I asked for, the whole experience was very condescending. We knew our daughter was sick."

The hospital refused to re-admit Rebecca. By the next morning, she was septic and bleeding from the nose. Phyllis will never forget the sight of her husband desperately performing CPR, or the seemingly endless ride in the ambulance. But baby Rebecca didn't make it. The Rabinowitzes ordered a state autopsy (independent of the hospital) -- and it revealed that baby Rebecca had had a common enteroviral infection, not a common cold. Had her symptoms been properly diagnosed and treated, she would still be here today.

Instead, Phyllis and her husband, Andrew, learned -- in the most horrible way -- that most emergency room physicians are not properly trained in pediatric emergency care. In fact, very few hospitals have all the necessary equipment to properly treat babies.

"Like any parents, we were profoundly sad and angry," says Phyllis. "I was in a deep depression. We started researching for answers. We knew something was not right. We learned that all ERs are not created equal when it comes to being ready to treat infants."

Sitting in their den with supportive friends and family, Phyllis and her husband decided to do something -- and the R Baby Foundation was born. The nonprofit foundation has the distinct purpose of saving as many babies' lives as possible -- particularly those who have some sort of viral infection in their first month of life -- by improving pediatric care in emergency rooms across the country. Today, R Baby's work includes raising awareness about infant mortality and emergency-room care, providing training opportunities for anyone who touches a baby, providing life-saving equipment to hospitals, and parent education. (Check their website for a soon-to-be-released 10-page guide for parents.) 

I'm a proud supporter of the R Baby Foundation, and I consider Phyllis to be my sister in the struggle to reduce infant mortality -- a cause I am passionate about through my work at MochaManual.com. This year, the MochaManual team and I will be once again participating in the R Baby Foundation's Mother's Day Run/Walk on Sunday, May 9, in New York City's Central Park. The aim of the Walk is to raise awareness and funds to improve emergency pediatric care for babies. What a great way to start my Mother's Day! Team momlogic, anyone? There are plenty of activities for the whole family.

Phyllis and I were having lunch recently, and I so admired her strength and her determination to turn her tragedy into a triumph for other moms and their babies. (I also admired her radiant glow. She's expecting -- and looking fabulous!) Phyllis had an amazing career in the cosmetics industry and a job she loved, but her life-changing experience became a career-changing experience. As we talked about the joys and challenges of running a business, she said, "I knew work would no longer fulfill me in the same way as being forever connected to my daughter through this work. I just followed my heart and never looked back."

If you're a mom who followed her heart to a business or nonprofit venture, join Phyllis, myself and an amazing roundtable of kick-butt mompreneurs this Friday, March 5, at 12:30 PM EST for a dynamic discussion of priorities, community, risking it all and having it all. Click here to register for the live webcast event and join the conversation for a worthy cause.

As for life after loss, Phyllis says it best: "My baby only lived eight days, but she's in my heart every day. And she inspired us to help save other babies so they could live their lives."



47 comments so far | Post a comment now
Kristyn March 3, 2010, 9:12 PM

My heart goes out to these parents. As a mom of 2 toddlers, I just couldn’t imagine this situation happening to my family. I’ve heard too many times about how dismissive these ‘doctor’s’ are and something really does need to be done when it comes to patient care, especially of those too little to speak for themselves. I’m so sorry for their loss and hope a change comes out of the loss of this sweet little baby girl.

Stephanie March 4, 2010, 2:06 PM

What an absolutely heartbreaking story. I can’t imagine the anger I’d feel at that doctor and hospital staff. Newborns are so fragile so for new parents to be talked down to like that for bringing in their sick child - no matter what the symptoms - is unforgivable. I think it’s incredible that these parents have channeled their feelings in to positive actions after the fact.

twinsmomof4 March 8, 2010, 9:59 AM

The loss of a child is something no parent should experience. The courage to help others and make them aware of your experience is commendable. It is my hope the hospital staff gets further training so that no one ever experiences what these parents did on that tragic day. Most parents are not aware of the different levels of medical facilities. We take our children to a hospital and place their life in the hands of others. I was not aware of the different levels until I became pregnant with twins. I asked my Doctor why he chose one hospital over the other. He explained to me that multiple birth pregnancies are high risk and that a Level 3 Neonatal Intensive Care Unit (NICU) is the highest level of care. They are equipped for care of special needs for infants and preemies. Ask your pediatrician which hospital has the best care for infants in the event of an emergency in the city or state you are located in. Don’t be afraid to ask for a second opinion or to call on a specialist. My son had fluid build up in the hip area, the school called me to pick him up because he could not walk to the bathroom or walk at all. I took him to the nearest local hospital. They did an MRI and showed me the scan. They suggested the fluid be removed immediately. I said WAIT! Do not do anything further I want to speak to his pediatrician. I called the emergency line for my sons pediatrician. The Pediatrician called me back and did NOT recommend removing the fluid. He called a specialist in Houston he asked several questions and recommended ibuprofin to reduce inflammation and to wait and watch for a couple of weeks. It was about a week before he walked with a limp by the 7th day he was perfectly normal. The specialist from Houston was in our city for a conference and was kind to see my son for a quick visit. This specialist advised me that had I removed the fluid it could have introduced bacteria and infection that might have prevented him from playing sports the rest of his life. He had Toxic Synovitis of the Hip common, limiting inflammation of the hip that can last 1-2 weeks. A recent viral infection, injury to the hip joint or even a common cold could settle in the hip joint. My son was 6 at the time. No fever everything else was normal. If the specialist is uncertain and it does not improve THEN they would need to take some fluid to rule out a bacterial arthritis. Not likely to recur. As a parent, every situation is different for every child. Use your judgement. If it is odd and your gut is telling you something just isn’t right it most likely is. Blessings to all parents out there and all physicians who change the world with quality care. We are faced with tough choices everyday. Know in your heart you did the right thing and most parents would have done the same. Best wishes from all at twinsandtriplets.com Best wishes and thanks to the parents that are changing the world with stories like this one. She will not be forgotten Rebecca Ava will live forever in our hearts.

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