One morning at around 4AM, as I wandered around a Neonatal Intensive Care Unit, checking on the sicker of the 80+ babies I was helping to take care of that night, I sat down with a father at the bedside of his daughter, pausing to ask him about his life, outside of the hospital. I had become accustomed to the muskiness that came with humble livings in the country and the mutza suit that he would be wearing almost every day. Given my lack of interaction with certain groups of people over the years given my geographic restriction, I wasn’t sure where to begin with attempting to understand who he was as a person and what defined his life as well as that of his daughters during this trying hospital admission. So I asked him, very cautiously as to not offend, what it was like to be Amish and the choices that had allowed or brought them into our realm of technology that was so far beyond the normal comforting measures, I had always expected for the Amish; and, by a simple transparency of vulnerability, respect and honest curiosity, I learned so much.

Years ago, he told me that his parents were some of the first to come to this part of Missouri to establish a colony. Humbly, he told me of how he came from a specific surname that had been ubiquitous in New England and slowly migrated itself across the country. Over the years their descendants had grown to include >10 small collectives and a central church with a Bishop that more or less decided on the law of the land for the community with almost over 150-180 grandchildren at this point. The Bishop, as I’ve learned by research and obviously watching the TV Show Breaking Amish (just kidding), has the authority not only to decide on who will marry and the consequences of those that violate Amish law or bring themselves into a status of excommunication, but also can establish the length to which assimilation into the non-Amish Western world is allowed. When i worked in Maine, I remember seeing a buggy with lights on the back… who knew! I was confused as to how they were allowed to seek solace in our medical community given the whirling of machines all around the floor. He told me that at least for his community, contemporary medical care wasn’t completely outlawed. His own father had a bad blood infection years ago that had required a PICC (peripherally inserted central catheter) line and the long-term administration of antibiotics at home. To my surprise, he and other members of his community learned how to use, dress and take care of the PICC line at home… A feat that is challenging even for those that are technically savvy with modern technology. He informed me that it wasn’t against their rules to seek medical care and they were glad we could help.

Thinking back to the endless buggies i had seen in Maine, I realized that our hospital was 3-4 hours away from their home and had to ask how he had gotten there. For over a month I had seen him every single day, how was it that he was here? He told me that in their community, while they didn’t believe in driving automobiles, they would hire drivers to take them far distances and that he had been staying in our provided housing for all of these days, waiting each day to see if his daughter would make progress or we would have new news on the next steps. I learned that, not only would they hire a driver to take them to necessary things, but each year they would take their kids on vacation to St. Louis or Kansas City to visit the ZOO… The ZOO!

We talked for a while longer, and then the heart of the conversation shifted to a much more relevant conversation: the neurologic and medical state of his daughter.

Despite over a month of them being in our care, we didn’t have a clear diagnosis for what was wrong with her. We just knew that her muscles didn’t move normally, her breathing was inconsistent, and her ability to eat or swallow was absent. Despite a myriad of testing and multiple specialists, we couldn’t fix her. It was at this point that he discussed Faith. It was at this point that he discussed that if this was what was going to happen, this was God’s way, we are all going to die, and we should all accept this.

And then, he gave me a perspective I wasn’t prepared for…

Their long stay in our hospital had almost bankrupted the Amish community… By their decision to continue with treatment with her and our reluctance to give up trying to help figure out an answer or a direction for treatment (because, outside of not eating, she really didn’t look that clinically unwell), he had ended up spending an unforeseeable amount of time away from the community. It was about to be harvesting season, and they needed to get home to help, or they would go hungry in the winter. They had figured everything out, should we find a way to get her home with them… They were going to charge car batteries at a friend’s house and change them out twice a day to work the oxygen machine and the feeding tube for their baby… They were prepared to learn what they needed and figure out how to have follow-up for her when they went home… But, a breaking point had been reached, and we weren’t progressing at the cost of their community; they needed to go home.

After multiple difficult ethical discussions and convening with various groups of specialists, given we had an unknown diagnosis but a clear clairvoyance towards a continual downhill trajectory of breathing and feeding, a group decision was made by the medical team and the family to send our little bebe home… Forever this will be a decision that I know will be difficult to forget, challenging to understand, and in my own opinion, eternally the right thing to do.

My job is to take care of my patient, whether that is a baby or a child, but it doesn’t ignore the family unit or the community. The father told me very kindly that this baby was his 17th child and among all of the grandchildren from the original colony, placed her at over number 150 or so of grandchildren… He didn’t really know, but doesn’t know the names of everyone admittedly.

He teared up and cried as I shook his hand and thanked him for opening his life to me… You could tell how endlessly he loved his daughter and how difficult of a decision this was. It altered my perception and changed my reality for what is important and how to traverse the difficult landscape of varying beliefs in medicine across the country and the world; and, I will endlessly respect and appreciate how he had allowed us to be part of the tale of his life and that of his daughter.

She went home with Love and grace, and a few days later, joined her ancestors, on the other side of the golden fields. Rest in peace.

References: https://amishamerica.com/missouri-amish/
Image Credit https://www.ohiosamishcountry.com/articles/amish-dress#:~:text=Amish%20men%20wear%20straight%2Dcut,wear%20a%20vest%20to%20church.