Clockwise from left, Jason, Owen, Morgan and Gideon Simpson.
Essay

How my newborn son’s death changed my perspective on medicine

My son Gideon lived for only 34 hours and 42 minutes, yet his profound influence on me will impact every patient who ever enters my practice.

This story originally ran on the Council of Osteopathic Student Government Presidents (COSGP) Students of Medicine Facebook page. It has been re-published with permission and edited for The DO.

Jason Simpson is a second-year student at Edward Via College of Osteopathic Medicine-Auburn Campus (VCOM-Auburn) from Amory, Mississippi. He and his wife, Morgan, have been married for almost four years, and they have a two-year-old son named Owen.

At the tail end of his first year at VCOM-Auburn, Jason and his wife became pregnant with their second son, Gideon. Sadly, it was discovered early on that Gideon had multicystic dysplastic kidneys, a condition which he would tragically not be able to overcome once he was born. Here is that story from Jason’s perspective.

Gideon’s story

On Sept. 16, 2017, my wife and I held our day-and-a-half-old son Gideon in our arms as he passed from this life into the next. We found out early on that he had some type of bilateral multicystic renal dysplasia, but we are still awaiting testing to determine the cause. In the short time he was with us, Gid gave us so many little gifts, but the most incredible of these must be perspective.

Summing up our prenatal journey with Gideon is simple: It got worse every time we had an appointment. First, his kidneys were huge and underperforming. The next visit, they were bigger still and there was no measurable amniotic fluid. We were told he did not even have a 1% chance of survival.

We drove to Cincinnati to speak with specialists there about a possible experimental treatment. And as we traveled this arduous road, our coursework at school began to cover the kidneys. I distinctly remember sitting in class when multicystic dysplastic kidneys were shown on the screen for the first time. It flashed up on the screen, the professor said it was not compatible with life, and that was it. This monster that my wife and I had been wrestling with for weeks was taught in four minutes across three slides.

I wasn’t mad, or even upset. I just remember that I began to think back over all the other conditions that had been taught so briefly, the ones I had studied quickly so I could focus on the “heavy hitters” that may get their own lecture. And I began to realize the tremendous weight that each condition had. I could not even begin to count the entirety of the diseases we had learned, but now I understood that so many of them resulted in heartache for those involved, entailing the loss of a child, a healthy life given sudden brevity, or some other monstrous burden laid on their shoulders.

The easiest thing to do after suffering a tragedy is to put distance between you and anything that might remind you of your adversity. However, my wife and I realized something very early on. All around us are people who have experienced similar pain, and one of the most effective ways to approach monumental grief is to be hand-in-hand with someone who has endured it firsthand.

One day, I will be sitting down with a family to deliver a difficult diagnosis much like the one we received, and in that moment, I have two options. I could emotionally disconnect; presenting the facts and most likely offering a mumbled “I’m sorry” as I leave the room. Or I can help guide them through their new reality by allowing them to see into my own experience with grief.

Author Levi Lusko in his book “Through the Eyes of a Lion: Facing Impossible Pain, Finding Incredible Power” talks about how experiencing tragedy is a “terrible privilege.” What this means is that those who choose to use their heartache to help others in similar circumstances can make a tremendous difference, but it comes at great cost.

As you watch patients, friends, and family trudge through their grief, you will be taken back to re-experience what was most likely your darkest hour. However, I believe that that is the definition of true selflessness. Because as you continually re-enter that place of immense pain for someone else’s benefit, those you help will soon realize that the darkness that seems to be so insurmountable is undoubtedly conquerable.

That hope is one of the greatest ways a physician can care for their patients. To be clear, we aren’t giving them a false hope that we will, without a doubt, cure what ails them. That would be undeniably cruel. Instead, we are providing a light in the darkness, the knowledge that the cloud hanging over them will break. As a future physician, I am resolved to stay vulnerable for this very purpose. The day that I close my emotions off from my patients is the day that I cease to truly care for them.

Gideon lived for only 34 hours and 42 minutes, yet his profound influence on me will impact every patient who ever enters my practice. Because of him, I hope to hurt with each family I care for. Being jaded in the face of such sadness would allow me to escape some of the pain, but uniting with those who hurt to give them courage in their fight, to me, is what being a physician is all about.

14 comments

  1. I’m so sorry for your loss; I can only imagine how brutal this time in your life must have been and my best wishes to you and your family.

    I’m an interventional pain specialist, and as someone who deals with patients in chronic pain daily and innumerable forms of suffering related to it, I can certainly identify with your desire to use your own personal tragedy to be able to empathize with your patients. That said, I also have to tell people every day that I have to decrease their opioids because of previous inappropriate treatment, something that they definitely don’t want to hear.

    Becoming involved with every patient’s tragedy and subsequently reliving your own may (in the long run) be detrimental to you as a physician, because it may result in you having a connection that is a bit too emotional and that could potentially cloud your or your patient’s judgment. As a physician, one of your jobs is of course to be empathetic, but your most important job is to make a diagnosis and to delineate a treatment plan in an objective, reason-based and evidence-based way to allow your patients to make the best decision even in the face of emotional struggle or trauma. As a doctor, you should always aim to be a pillar of strength and hope, but it shouldn’t be an aim of yours to give them the right counsel; that’s your responsibility, and is ultimately your greatest one. And that’s true even if your counsel is something that your patients won’t want to hear or doesn’t resonate with their image of themselves or their family members.

    I hope that makes sense and best of luck with your career.

  2. Jason
    You have conveyed very well the most important quality that makes a true physician – empathy. One can be the smartest and well read doc around, but without empathy one cannot be a healer. Never more important than in today’s medical world of distancing docs from patients with all the regulations and electronics.

  3. Thank you for this touching story and for sharing your grief. Remaining vulnerable to reliving our own pain is what keeps the human connection alive between us and our patients. When there is no more we can do medically, it is the best healing gift we can provide for our patients.

  4. Thank you for sharing this.
    We all need to be reminded of the “big picture” that no matter how technologically cool we have become , that we are taking care of people and families . We and they have no or little immunity from suffering too.
    Guard and treasure your joy , that of your family and your patients.
    May we be remembered for comforting the sorrows and adding to and celebrating the joys of those we encounter.

  5. Thanks for this essay. I am an OMS I, and my second child is on the way and I can’t possibly imagine how hard all this was for you.

    Your words are an encouragement to me and a motivation to work harder and do better so that I can provide better care for my future patients. Thank you for choosing to walk humbly with those who suffer… don’t loose that quality.

  6. Beautifully put, Jason. Thank you for sharing Gideon’s and your family story with us. May we all live and practice with such humbling empathy.

    Tina Mascarenhas, DO, MPH

  7. I am finishing up my M1 year at PCOM and I have two healthy little boys of my own, yet both stared down very serious neonatal infections and currently have a few developmental diagnoses. My oldest survived bacterial meningitis as a newborn of three weeks old. E. Coli. My youngest survived staph omphalitis with his dx at three days old. Doing the microbio portion of my first year was pretty triggering, to be honest. Particularly the e coli. It felt like I was getting intimately acquainted with someone who tried to kill my baby. While it is not the same as your experience with heartache, as I ultimately got to keep my babies, I do want to send my sympathy and support.

  8. I predict a beautiful career for you. You have discovered the difference between being a doctor and being a physician-one who truly truly practices the art. It’s the more difficult path but it is right and good and will serve both you and your patients well. God bless you and your family.

  9. Jason,
    I thank you for sharing your experience. You have recognized the very important part of being a physician. That part is realizing that we will not always be able to cure the conditions that we diagnosis. However, we can help the patient and family through the difficult times by being empathetic and willing to help them along the road of life.

    Sorry for your family’s loss. Best wishes as you travel the road ahead.

  10. Thank you for sharing your story. I have forwarded it on to a patient that recently had a full term stillbirth. She too, has shown incredible strength and has used her “terrible privilege” to help others who have experienced similar heartache. You will be a wonderful physician with a dedicated following of patients that truly love you. God bless!

  11. Jason,

    Thank you for sharing your heart wrenching story. I admire that fact that you have chosen to embrace adversity without shrinking back and will allow your experience to help mold you into an even greater physician. You will never regret your choice to bond and empathize with your patients.

    I retired last year after 30 years of Family Practice in the middle Georgia area. I, too, chose to enjoy relationships with patients rather than remain distanced and I am glad that I did.

    May God Bless you as you complete your training and go on to share your skills and gifts with your future patients.

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