BY SOPHIA ZILBER

We never know how we are impacting the people we meet. We hear this a lot; and yet it’s rare that we get real confirmation of it. But sometimes we do. It’s been more than six years now since that Sunday morning when I called the On-Call pediatrician at the Pediatrics practice that was partnering with ours for off hours, and asked her to see Miriam, my 3-week old girl. I’d had problems feeding her since birth, she’d gone from crying around the clock to being lethargic and never crying, and then finally I found her body cold to the touch and her tiny hand looking puffy as if there was fluid inside it. And even though I had no idea that anything was wrong, my intuition told me to call the doctor in panic. The doctor  told me to come in right away. I hurriedly dressed Miriam and nearly ran out of the house, asking my husband to come with me and calling my in-laws to come over to watch our other three children. 

As the doctor began examining Miriam, she stopped immediately and said she needed to call 911. I remember starting to cry right then, and crying all the way in the ambulance and in the emergency room. I cried – not because I knew that my beautiful baby, my only little girl, would be diagnosed with a horrible fatal mitochondrial disease and die a few weeks later. And not because I knew that it was my last time ever seeing my baby in her pretty clothes, that I put on at home, in her car seat. And not because I knew that a few weeks later I’d push the car seat and her clothes as far as I could into the shelf in her NICU room, and tell the nurses that I wouldn’t be strong enough to deal with it, and if they could please donate it or take care of it as they wish. And also not because I knew that this was our last car ride with her, and that the future that had just started for our family would never ever be. I didn’t know or imagine any of this at that time. I think I cried from shock. I believed things would be just fine, that doctors would help Miriam and that we’d  be back home within a few hours.

This doctor who sent us to the hospital later called my cell phone but things became very serious very quickly and I was unable to pick up. Nurses at the hospital told me that she called to check in, and how shaken up she was, and that she’d told them that this was one of the most frightening moments in her career as a doctor. We found out that she had called 911 because Miriam’s breathing was irregular and her temperature was dangerously low. We found out that had we not been seen when we were, Miriam would likely have died that same day at home. We would likely never have found out why, as she would not have been tested for a rare disease,. Things worked out in a tragic yet also tragically miraculous way.

Miriam was put on life support right away at the emergency room following a brief explanation from a doctor, “We just need to give her something to help her breathe”  and admitted to the NICU. She lived for four more weeks.

When we are in the middle of a tragedy, when we are touching death, every encounter we have feels very significant, deep, intimate; every word is significant and stays with us forever. After Miriam was gone it seemed like something else needed to be said or done, otherwise it felt unfinished. So in the weeks following Miriam’s death, I tried to get back to the kind people who had crossed our path during her brief life, including those we encountered medically. 

My husband and I ordered a beautiful art piece for the nurses break room at the hospital where Miriam stayed for them to enjoy and to remember her. I also visited the pediatrician’s office and brought her a butterfly mug that reminded me of Miriam and flowers. The doctor told me that Miriam was a beautiful baby. I remember thinking that she was the last one to see Miriam as a real baby, before she had a breathing tube and tons of devices attached to her tiny body. 

Fast forward to last month, six years later: I received an email with the subject “Thinking of you” and found a message from this pediatrician. With her permission, I share it here: 

Dear Sophia,

I’m just writing to let you know the impact that your beautiful baby Miriam has had on me as a person and a pediatrician.  I keep the butterfly mug that you gave me in a prominent place in one of my kitchen cabinets, so I think of Miriam every single morning as I reach for my coffee mug.  She reminds me to be humble as a pediatrician and a parent.  She reminds me of the fragility of life.  She reminds me that sometimes bad things happen, even if we try our hardest to prevent them.  And sometimes I just get an aching pit in my stomach when I think about you and your family, and how hard this has been for all of you.

I’m sorry I didn’t write sooner–I’ve written this note to you in my head so many times, but didn’t send it–it’s been hard to find the right words to stay.  But I want you to know that I carry the lessons taught to me by Miriam every single day.”

I read the email over and over. I had not expected to receive any message from her. Even more than that, although I always remember this doctor being very affected by our story, I did not know that she still had the mug, and did not imagine that she was looking at it and thinking of us daily, or that she wanted to write for so long but was afraid to do so. In receiving this message, I experienced how important it was and how good it felt to now know these things. I was so grateful that she had sent the email six years later. 

Yet, just as when asked “How are you doing? ” I didn’t know exactly how to respond.  Should I share that I forever have a part of me missing and my husband feels the same? Or should I say that we’re doing really well? Should I share that in the last 6 years I have emerged into a new brave and resilient version of myself, that my marriage has evolved to a new much higher level, and that I’ve been blessed to see my boys grow and see over and over how kind, smart, and compassionate they are; that I’ve found myself asking them for advice rather than the other way around and that I’m constantly amazed at their wisdom, maturity, and sense of humor? Should I share that I’ve been able to leverage my data expertise to help the rare disease community, to build a worldwide patient registry for Leigh syndrome, and that this work in Rare brought some of the most rewarding experiences, as well as some of the most difficult and demoralizing; and that the hard ones have helped me find my voice and use it? And should I mention that no matter how well things are now, I deeply miss, want, and feel what could and “should” have been? All of these things are true. But it feels too much and too hard to gather into an email response or one conversation. I did respond that I was so  glad to receive this email, which is very true. In a world that is so often painful and hard, it’s so good to get a reminder that kindness matters, that we never know who we are impacting, that sometimes saying the things we want to say is important and meaningful and that for doctors or patients, it is wonderful when we can just see and understand each other as humans.

Sophia lives in Newton, MA with her family. She bridges her personal and professional experiences and is the Leigh syndrome patient registry director and a board member with the Cure Mito Foundation (curemito.org).