a letter from meg

Every Thursday I look back at a specific day and time that was spent with my daughter Matilda as she waited for, received, and recovered from a liver transplant. She was in the hospital for 72 days and we remained in NYC until she turned four months old.

a letter from meg

Today's post is brought to you by the wonderful Dr. Tozzi. Matilda was assigned to Meg on our first full day at Mount Sinai. She set the bar high. She wasn't afraid to let us in, to sit and listen. She got Tyler's sarcastic tone and was able to empathize with my pain. She did not look at us with sadness, instead she seemed to look to our strength. I appreciated her intelligence, ease, and calm demeanor. Meg was truly the best.

The following is a letter from Meg.
My initial thoughts when reflecting about Matilda are: really cute headbands; the wall decorated with Kelly’s projects; the owl costume; and trick or treating in Matilda’s room. I am forever grateful for the medical knowledge that I gained in caring for Matilda, but what I remember is how upbeat Kelly and Tyler were and how enjoyable their company was.

I met Matilda and her family on October 1, the morning after they arrived at Sinai. I did not know when Matilda was assigned to me that I would fall in love with her and her family. I knew Matilda was very sick and I could only imagine what her parents were going through. My cousin died unexpectedly when she was 13 and I empathize with each family with a sick child, knowing what my family went through. I can’t help but think of my aunt and uncle with each parent that I meet. As a resident, I am still learning my style as a doctor. The new teaching is that it is ok to let families see that you’re upset and ok to cry in front of them, but that you should never be so sad that they must comfort you. I did my best to keep Kelly and Tyler updated on Matilda’s medical status. I tried to answer their questions and to translate some of the medical information. I also tried to keep a little distance, to ensure that I was being professional, and to try to be the best doctor that I could be.

Initially we thought that Matilda had Neonatal Hemochromatosis and a treatment for that is a “double volume exchange transfusion.” This meant that our goal was to replace Matilda’s blood with donor blood twice over (double volume). For me that meant that I would sit at Matilda’s bedside for many hours removing 9 mL of blood every few minutes while new blood was running in. It was during these hours that I got to know Kelly and Tyler a bit more. Tyler gave me an excellent lesson on fluid dynamics and the take home message was… well I’m not entirely sure. But we sat in that room together for a long time talking intermittently while some sporting events were being played on TV. Every so often Tyler would come to Matilda to check on her then return to his seat a few feet away. Kelly took a few pictures and assured me that I wasn’t in any of them, but she just wanted to document this event.

After that first week the teams rotated and I was not technically Matilda’s doctor anymore, except for when I was working nights and weekends. I came to visit them often, to stare at Matilda and silently pray for her, to chat with her parents and see if there was any way I could help out.

We (the medical people) say, “why is it always the good ones?” The meaning of this statement is that it’s always the best, most loving, most understanding, most supportive families that have the sickest children with the most stressful hospital courses. Despite the horror that they are going through, they are always so nice to us, always so understanding when a test or procedure is delayed, and always provided us with food.

At the bedside of each patient is a pullout chair that turns into a flat sleeping surface. Parents often complain about how horrible it is to sleep on those. I never heard Kelly or Tyler say anything more than a joke about the crazy sleeping arrangement. Kelly slept in Matilda’s room every single night that I was there on that tiny chair/bed. In the beginning, Tyler and Kelly shared that tiny chair/bed.

So many of my mentors talk about patients that they had in residency. They remember the children and their medical histories with such accuracy despite that it was decades earlier. In medical school we are taught to thank our patients for allowing us to learn from them. Reading about a condition in a book can only take you so far; treating a person with that illness will help you remember so much better. I recently took care of a baby with a very similar story to Matilda’s. Thanks to Matilda, I knew so much about neonatal hemochromatosis and liver failure and was able to foresee issues that would arrive. I have worked with many families with sick children since meeting Matilda, Kelly and Tyler, and I think that I am a better doctor for having met them.

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