How a Friend Saved Lives After the Death of Her Baby – Facts Every Mom Should Know

A story of my dear friend, what she knows now that could have saved the life of her child and thousands of others, what she’s done with that knowledge, and why you should know it too.

  I know, it’s not my usual humor column fare, but it’s nice to be able to tell the important stories every once in a while…

Phyllis seeing me off to a boyfriend's prom circa 1990. (Please ignore the hair. Oh and the eyebrows, duh.)

I became friends with Phyllis in the 7th grade. I wasn’t exactly the coolest 7th grader. In fact,… during my middle school tenure I was awkward and spent a lot of time quoting movies and SNL, which did not make me any cooler.

When all the girls were dressing in cute (slutty) Halloween costumes like Pebbles, as in, Pebbles and Bam Bam and Madonna, as in, Like a Virgin, I was dressing as Boy George and Ed Grimley, the poindexter SNL character played by Martin Short.

I wasn’t gonna get boys with my boy shaped body, I was gonna get them with my ironic wit and my awesome character impressions. Well, impressions I made. To most, I was weird yet humorous enough to talk to when no one else was looking. Phyllis was the opposite, she was beautiful, feminine and you could totally talk to her in public. She was also, unlike the stereotypical popular girls, kind.

By 9th grade, I’d come into my own, boys started to notice me and people actually talked to me in public. My humor was my calling card, and for the first time it wasn’t perceived as too weird or goofy. Phyllis had remained a star at our school.  She was in the student government, and backed causes, all while maintaining her status. She was also in all the honors classes, where we sat together making silly jokes and talking about sex, and boys – and how long we would wait to have sex with boys.

We would remain friends for many years to come. After I finished grad school, we lost touch. I would hear tidbits here and there in the way you would with any old school friend. It was before Facebook, so news took sometimes days even weeks to travel, not milliseconds. I heard about marriages, divorces, coming outs, a rare sex change, the usual fare, but not much about Phyllis. I eventually reconnected with her on FB and we began to message.

She sent me a Cause to join and after doing so, I wrote back, “What is R Baby, do you work for them?”

“Let’s talk,” she replied.

The phone rang, and Phyllis’s voice sounded the same as it had in high school, but her words were shocking.

“R Baby is named for my daughter Rebecca, who died.”

Having had two children of my own, I was speechless. I asked what I think we all ask next, “What? How? Was she sick, was something wrong?”

Not that it would in any way make it easier, but you want to know these things because it’s almost more unbearable to hear about something that could have been avoided, like a car accident or any one of a myriad of fears that drives every mother crazy on a daily basis. Pictures falling into cribs, gas leaks, head injuries, bathtub drownings, choking on grapes or hotdogs, fires, kidnapping, being hit by a car, lightning, manhole accidents, I could do this all day.

But, I don’t have to. We all know, those horrible images and thoughts that creep into our heads when we least expect it. Those beyond unwelcome visitors that like to linger and resurface when we are truly enjoying our lives.

“She had an infection that was misdiagnosed in an ER and could have been treated,” Phyllis said.
Ugh, my heart sank.

Apparently, the ER that she went to said her daughter had a simple cold. They made her feel neurotic. They made her feel overprotective and ignorant. In the end it was the doctors that should have felt unknowing and shameful. They had missed a common enteroviral infection, but was it their faults? They hadn’t had enough training in pediatric emergencies.

You see, there’s no standardization in the industry for pediatric training for ER doctors. My friend Phyllis, who had championed causes in high school and made everyone feel comfortable was doing what she did best, making life better for others. Using her charisma and her story to ensure others could avoid such horrific outcomes.

Her daughter, Rebecca would be 6 this year. Instead of watching her play and put on make-up, and talk in silly accents, she assures her little girl a legacy in the life of every child that is saved due to the funding of R Baby Foundation’s hospital programs and hopefully the passing of an important bill that will make sure ALL ERs are prepared for babies and children, and will create a uniform definition to qualify as a pediatric ER.

There was nothing I could say. There is no way to make it better, but Phyllis and her husband, Andrew, R Baby, its board, its funders, trustees, and supporters have vowed to make it better for someone else. To my dear friend, millions of moms and I thank you for your continuing and unrelenting efforts.

Things you probably don’t know, but should:

  • There are approx 20,000 newborn deaths within the first month of life and close to 30,000 in the first year.
  • The US ranks 36th among 196 nations in infant mortality rates.
  • Children make up 27% of all emergency visits, but only 6% of ERs in the US have the necessary supplies for pediatric emergencies.
  • Babies and young children are NOT mini-adults – they require specialized training equipment and supplies.
  • There is no standard definition of what a pediatric emergency department is.
  • Hospitalized babies and children are often most at risk for mistakes and miscommunication.
  • Continuing education in pediatric care is not required or standardized.

What R Baby has done:

  • Created call centers for ER doctors to speak with pediatric specialists.
  • Started the Poise (training) Program at over 100 hospitals across the country, which HAS trained over 20% of pediatric interns nationwide.
  • Created infant blood libraries that detect viral infections, reducing the turnaround time from 2 weeks to under 12 hours.
  • Empowered parents to listen to their maternal instincts, with programs that help them communicate with hospitals.
  • Raised over 5million dollars.

What YOU can do to help prevent these tragedies for yourself and others:

  • PLEASE SIGN THE R BABY PETITION AT CHANGE.ORG – SO THAT A BILL CAN BE PASSED IN WASHINGTON THIS YEAR.
  • 
Know your local hospitals and what types of ERs they have (General, or Pediatric)

.
  • Know the locations of local Pediatric ERs

- Ask your pediatrician where he/she would like you to take your child in case of an emergency.
  • Trust your gut: Ask for a second opinion if something doesn’t feel right.
  • Pass this piece on, so that others can sign the petition. This bill will help save lives and it will demand that your ER department is prepared for your child.

To join the R Baby Foundation in it’s heroic efforts, go to R Baby.

20 thoughts on “How a Friend Saved Lives After the Death of Her Baby – Facts Every Mom Should Know

  1. Phyllis Rabinowitz

    You always were the best of both worlds – funny and caring – thank you so much xoxo

    BTW- The petition will be taken to Washington for serious healthcare changes…thanks for everyone helping!

    Reply
  2. Rachel

    Thank you for taking a break from your usual humor to share this story and call attention to this, Jenny.
    It is truly a beautiful post.
    Love, Rachel

    Reply
  3. Jenny

    Singed and passed it on… thank you so much Phyllis for using your tragedy and loss to save lives and make things better for our kiddos. Hugs and hats off to you.

    Jenny

    Reply
  4. Cara(Eli)

    I have felt this ignorance first hand. I nearly lost my son when he was 4 months due to there not being any pediatricians

    It was a horrible experience and I was called all kinds of nasty things, but I know today that if I hadn’t DEMANDED and been PUSHY until they did send me to another hospital where they had pediatricians, my son wouldn’t be here

    Reply
    1. Jenny from the blog Post author

      Cara you comment gave me chills. That’s really the point of this charity to help save lives. Youre lucky that you had the composure and confidence and intuition to direct the situation to a positive outcome!

      Reply
  5. kristen from motherload

    You are a great storyteller, Jenny! I just wish the story about reuniting with your friend wasn’t so heartbreaking. But how amazing/impressive all the work she’s doing is. Good for her for turning her experience into helping others.

    I will definitely sign the petition and spread the word.

    xoxo

    Reply
  6. Shelley

    Signed! How is this already not in place?? Sounds so elementary.
    I lost a son at 39 weeks pregnant and couldn’t imagine losing him after spending time with him alive out of the womb. It was the hardest time of my life, trumped finding out I had cancer. At least cancer I have a chance of beating. And to know her baby could have been saved, breaks my heart. My heart goes out to your friend and to all the other moms of angels. xoxo

    Reply
  7. Jenny from the blog Post author

    Thank you Shelley. I have to say, as a humor columnist, my pieces don’t usually get these types of heartfelt in some cases sorrowful comments. Thank you for your wishes your words and your support for this cause.

    Reply
  8. Janet

    Your Friend IS SOOO BRAVE!!! What strength to get up day after day & continue to dedicate herself to this cause, to relive – day after day – this trauma so that others don’t…
    I will most definitely sign this Oh-So important Petition. My son, too, almost died – 2 times: Once from a misdiagnosis because the ER Dr. didn’t do an upper GI in Real Time – he thought a plain old X-ray would suffice because my 10-day old baby was “so small” and from an ER Dr. not catching a skull fracture which indicated a subdural hematoma.
    If it wasn’t for a friend encouraging me to follow up with my brand-new 10 day old mother’s intuition, my son would surely be dead of a Malrotation of his intestines. If it wasn’t for my perseverance and going to 3 ER’s over the course a few days – who knows what would happen.
    The fact that this woman is SO BRAVE

    Reply
  9. Annette Jett

    Wow- what an amazing triumph in the face of such tragedy. As mom of a special needs daughter w/a congenital brain disorder which is often misdiagnosed, I have spent my fair share of time in and out of hospitals insisting that mom’s intuition sometimes outweighs minimal scientific testing. I am signing this petition and encourage parents to trust their ‘gut’ when it comes to their children. God Bless you and your dear friend Phyllis for bringing this to our attention!

    Reply

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