A Letter from R Baby Co-Founder Phyllis Rabinowitz

Dear R Baby Supporters,

You have helped make it possible to give babies and children their voices to demand the best possible emergency care for every child no matter which ER they go to.   It’s still surprising that overall children’s healthcare is underfunded versus adult’s healthcare, including in emergency care where R Baby focuses.  Well, I’m proud to say we had another productive and successful year working with our amazing hospital partners to bridge the gap and improve pediatric emergency care in as many ERs that we could impact.   R Baby has reached more than 900 hospitals, trained over 1500 physicians and 1000 support staff and our work has been presented at 75 conferences and in 50 publications resulting in impacting the care of more than 1 million each year.  However, there are 5,000 ERs in the U.S. and there is still so much more we can do with your support.

I also wanted to take a moment to share a personal story in the hopes that it may help others.   I’ve previously shared how losing our baby Rebecca Ava was devastating with an incredible depth of pain and sadness that Andrew and I will always share. But I haven’t shared how her death has left me with PTSD—Post Traumatic Stress Disorder – that affects my daily life.  I’m sharing now because almost 12 years later, PTSD has impacted so many parts of my life that I didn’t even realize it. I was never an anxious person before this major loss. It has taken me a long time to realize its impact and I hope sharing my story will help others who have faced a traumatic life event.

For the first few years following Rebecca’s death, I was always worried that another baby of mine would die. I would frantically pull over on the highway to make sure my oldest was breathing when he was napping in the backseat. I would jump up in the middle of night when my 2nd son cried since it reminded me of the night Rebecca died. I jumped and ran so quickly one night and I hit the bedroom door so hard I had bruises up and down the entire side of my body. Every cold my three sons had when they were young resulted in more than just the average mother worry…it was severe anxiety for me.

Everyone told me that once I got through the baby phase I would be fine. But I wasn’t.  And I’m not.

I still feel paralyzed with fear that another child of mine will be taken from me even though my children are 7, 10, and 14. In my heart I know that the fear is irrational, but it feels so real. It hits me when I least expect it and even during very mundane and normal moments: watching my carefree youngest son cross the street, an unusual skin issue with my middle son or even when my oldest gets a stomach bug. I am transported back to that terrible day and the fear and helplessness I felt.

I have explained to my kids so many times how rare it was to lose Rebecca so they will not worry or think about the possibility of any child dying. I will continue to shield them from any unnecessary worry since I intellectually know it’s not healthy for them or anyone.   But sometimes my heart just doesn’t believe it. It comes and goes of course, but the panic attacks have come and gone for years twice landing me in the ER since I thought I was having heart attacks. (My cardiologist and I are pretty close, too.)

R Baby has been an important part of our lives for so many reasons. It has given Rebecca’s life so much meaning and my family so much fulfillment. It has helped us provide training and education to help prevent other families from facing the tragedy we did. I’ve spoken to parents who have lost multiple young children, parents with the inability to conceive, parents with children with severe medical issues from poor healthcare and so many other heartbreaking stories. These real stories can cause me excessive worry about my own children but I am honored to listen since they are both personal and provide such important opportunities to continue improving healthcare and help others make a difference.

Unfortunately, the complications of PTSD are not limited to just my children but it’s not relevant for this letter.  I just want to share that I also worry I’m not doing enough for other children.   That’s the good news – the PTSD continues to ignite my passion for saving and helping as many children as I can and we are as committed as ever.

As far as coping, I’ve tried to live by the words ‘not to worry about what you can’t control’ but it is a constant challenge.   With the support of great friends and family and helpful distracting techniques I’ve been coping well lately.   But I wanted to open up just a little bit on the impact it has had and let those who may be facing similar feelings after a traumatic loss know that they don’t have to live this way either. Together we can change our thoughts. I would be happy to go through this journey with others who might suffer and I invite and encourage you to reach out.

We will continue to work passionately for the benefit of all of our children while I continue to focus on my own healthcare as well.  With your support and help over the years, we’ve made incredible strides with our grants and look excitedly toward the future. You can read about our grants and their impact here.

Co-Founder and Co-President

Phyllis Rabinowitz (with Andrew)

In loving memory of Rebecca Ava Rabinowitz 7/13/06-7/21/06

 

×