Victor Frankl is an Austrian neurologist, psychiatrist, and Holocaust survivor, who survived three years in the concentration camps of Dachau and Auschwitz.
He once told a story about a woman, his patient, who called him in the middle of the night saying that she wants to commit suicide. Viktor Frankl kept her on the phone, giving her many reasons to keep on living, until she promised not to take her life. He later asked her which of the many reasons that he gave her was the one that changed her mind. She said – neither of those.
It was the fact that one person was willing to listen to another’s distress that ultimately made her decide that this world is one worth living in.
This is a story I read a long time ago, but thought about recently as I’m processing my thoughts and grief over losing my newborn daughter, Miriam, to a rare disease.
Miriam was born a beautiful perfect baby. Born after three boys, she made our family feel truly complete. Yet something wasn’t right. I wasn’t able to have a single successful feeding with her even with the help of nurses or lactation consultant, despite having great experience breastfeeding my boys right from the beginning. I kept telling the nurses — this isn’t at all how it was before. I thought I knew how to do this, but each time, I got the same answer: each baby is different, she’ll get there.
There were other issues too. She had a heart murmur that I was told wasn’t serious and would resolve. A nurse also told me her breathing sounded like she swallowed air at birth, which should have also resolved.
As I was leaving the hospital, I remember telling the discharge nurse: “I don’t know how I’ll do this.” She smiled and said, “What are you so worried about? This is your fourth kid! You’ll figure it out!”
Looking back, I wish I had been more assertive and insisted that Miriam was checked out in the NICU, but at the time, I also didn’t suspect that anything could be seriously wrong. As my husband pulled up in our van, and I got into the car — I started to cry. I had a long labor and hardly got any rest or sleep in the hospital because of the non-stop feeding struggles. I was going back to my loud and busy home, feeling weak and exhausted, unable to feed my baby, and not having any idea how I’ll manage.
In their defense, it is important to say that our very experienced pediatrics group who knew our family well for almost 12 years prior to that did not think anything was wrong either until Miriam was 19-days-old and was taken to the hospital by ambulance because of very low vital signs and irregular breathing. She died from mitochondrial disease four weeks later.
As I was processing everything that happened in the months that followed, I have emailed the hospital where Miriam was born. I didn’t know where to write and emailed a general email for the patient relations department. I wanted to tell them about her feeding and other issues in the hospital and what eventually happened. I did write that I wasn’t blaming anyone and that her disease has no treatment or cure. Still, I wanted to share what could happen in case it could ever help with another family or another baby.
A couple of days later, I got a response from the chief nurse of obstetrics and postpartum unit. She was suggesting that we speak on the phone and wrote the words that especially touched me: “I would like to talk with you to gain more insights about how we could have cared for you, your daughter, and your family better.”
We have scheduled a call and talked to her and the nurse director. They started out by asking me how I, my family, and my boys are doing. They said that they read my email but would like me to describe everything again in my own words so that they can hear it from me. I told them the story, and we just talked for a while.
They asked in what ways they can support my family and suggested that I can bring my boys to talk to them if that would be helpful. The chief nurse who emailed me gave me her cell phone number and told me I could always reach out again if I have anything more to say or share. Of course, I never contacted her on her cell phone, but I thought it was incredible that she was able to approach me with such openness and trust.
I know that things could’ve gone very differently. Had they responded defensively, our conversation would likely amount to exchanging a couple of formal emails and ended with all of us feeling like we were misunderstood.
I’m incredibly grateful that I have reached people who had wisdom and intuition to know that I wasn’t writing to cause any issues, but because I needed to talk about serious and important things that really mattered to me. I’m grateful that they let me talk and — most importantly — listened. During our conversation, I had a chance to tell them about the births of my other three children and how wonderful the care was that I have always gotten in their hospital and that despite our tragedy, I’ll always have warm memories of being there. We have all learned and gotten to know each other better, and I will always remember it.
It is usually our most difficult experiences that really stay with us and change us, but so can the good ones. We don’t yet have cures for many devastating diseases, and we often don’t have clear answers to many medical challenges, but we all can have so much impact just by listening to each other with open minds and hearts.
Sophia Zilber is a patient advocate.
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