From a physician-parent’s perspective

Maddy gets an EEG.

Everyone always says that pediatricians become better physicians once they have children of their own. When I found out I was pregnant with my first child, I started to envision each patient as my own child, and it changed me, for better or for worse. I cried more, I smiled more, and I just cared more. I was able to look at situations from the perspective of a parent, and I could not imagine what it must feel like to watch your child, the most important person in your life, endure the unavoidable discomforts of being a hospitalized patient.

Imagine my relief when I was blessed with a healthy, beautiful, full-term baby girl. The first couple of days were a surreal blend of joy, stress, love and an overwhelming sense of responsibility. After the first night at home, I really felt like we had overcome a major hurdle and that things would surely get easier from there. I told myself that if we were all going to survive, I needed to stop using my medical brain and start just being a mom.

That’s why on day of life 3, when my daughter started having what seemed like abnormal movements of her left arm, I told myself that most people probably would not have even noticed. I told myself to stop being a paranoid physician-parent who knows too much, and to just relax. Turns out I knew just enough.

What started off as focal upper-extremity movements progressed to left-sided seizures lasting up to 3 minutes at a time. All I could think was “please God, no, not seizures. Anything but seizures.” What happened in the hours thereafter is a bit of a blur. My mind ran through what we all refer to as a “differential,” and no matter how I approached it, the conclusion was the same: seizures = badness.

On the way to the hospital, I remember walking through what would happen, step by step, with my husband. I knew exactly what labs would be drawn, what procedures would be done, and what treatments would be initiated. I was literally as prepared for what was to come as anyone could be. But still, when it all actually happened to my precious baby girl, I felt like I had been punched in the stomach by Mohammed Ali.

I cannot even begin to describe what the following days were like. Words like terrifying, excruciating, mind-numbing and exhausting don’t even come close to describing it; there are literally no words. During that week, I experienced life as the parent of a sick child. It was the worst week of my life, and I’ll be damned if I’m going to let my daughter and my family experience something like that without learning something from it. This is what I learned:

Just make the time.

Maddy goes home!

The most important part of our day while in the hospital was meeting with the medical team each morning. Learning updates, getting questions answered and having a daily plan made it feel like each day we were getting closer to my daughter being healthy again. From experience, I know that morning rounds often feel cumbersome and even annoying if “too much” time is spent in a patient’s room. But do we really have so much to do that taking an extra 5 or 10 minutes to answer a worried parent’s questions will significantly alter the course of our day? No, not really. That extra 10 minutes the team devoted to my daughter meant the world; it was the difference between feeling like we were part of the team versus feeling like we were a checkbox. Every single day we should work to ensure that our patients and their families know that we value their health and comfort more than we value our own time.

Every single poke sucks. Period.

Sure, lab draws and procedures are a necessary “evil” of medicine. And as we all know, peripheral IVs are lost regularly, and it often takes multiple attempts to draw labs on a pediatric patient. But what we don’t realize, as the ordering physician, is how painful it is for a parent or loved one to watch those multiple attempts. And furthermore, how much trust a parent must have in the medical team to allow those attempts to occur. The fact that the majority of parents give us permission to continually poke their child without fully understanding why we need to do so is nothing short of amazing. The level of trust patients and their families have in us is truly humbling. Every lab, every procedure and every intervention we make should be thought about; if not, we’re abusing the trust we’re given and we’re not doing our job.

Everyone has a breaking point.

Maddy’s baptism.

As physicians we’ve all had the experience of caring for a patient, complex or not, and been amazed by the level of composure maintained by the patient’s loved ones. We’ve also all experienced caring for a patient whose loved ones at one point or another lost that composure. Loss of composure during a hospital admission is expected. What is difficult to anticipate, however, is when that composure will be lost and what event will tip a parent “over the edge.”

During my daughter’s admission I was able to handle LPs, multiple IV attempts and EEGs with what I think was impressive composure. But when she got antibiotic-induced diarrhea, I literally had a complete meltdown. For whatever reason, I just couldn’t handle the thought of her having to deal with just “one more thing.” Since then, when I go in to tell a family that we’ve had an unexpected complication, if I am berated and the blame falls to me, I try to take it in stride with grace and humility. I try to remind myself that it is not an attack on my character or my ability as a physician, but rather a parent’s way of coping with what is likely one of the most traumatic experiences of their child’s life.

Being a pediatrician, the person responsible for the well-being of a child, scares me. And we should be scared. We should be scared enough to think hard about each lab we order. We should be scared enough to find the energy to go home and read the latest research to ensure that our diagnosis is correct and that our plan for treatment is the absolute best available. And we should be scared enough to let ourselves feel the emotions that accompany such responsibility. Those emotions keep us from becoming robots that are simply trying to survive the grueling life that is the reality for practicing physicians. Each and every day, I remind myself of what it was like being on the “other” side, and each and every day, no matter how exhausted I am, I am thankful.

Sara Rourke, M.D.
Third-Year Resident in Pediatrics
OHSU Doernbecher Children’s Hospital

 

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Comments

  1. This is really lovely Sara. Thank you for sharing your story and photos of Maddy.

  2. This is beautifully written, conveys the emotions that a parent feels. I hope doctors everywhere in OHSU take this to heart. It is just as true for a parent when the child is 35 years old. Being a mom never gets to be easy. Rewarding, but not easy!

  3. I can so relate to the points you make here! Especially the trust in the labs which result in the endless poking and the unknown breaking point which isn’t known by anyone including and probably especially the parent! I might add one thing that a Dr. might remember when meeting with the parents after any procedure if it has gone well is to say it the moment they see the parents–be it in the hallway or wherever…not after waiting for everyone to get seated in the room, etc. Parents are on pins and needles and it’s an instant relief to hear that. I felt like I couldn’t breathe until he said “everything went well”.
    As far as taking the time…I always felt that the doctors at Doenbecher were there for us and took the time particularly in PICU!
    Thanks for sharing your story.

  4. I remember when you came in. I also vividly remember my son’s transplant journey. Although I’d never wish any medical procedures or illnesses on anyone, it really makes a powerful impact on our practice. It’s a very different experience from the other side of the call light. God bless. I’m glad you’re little one is doing well and look forward to working with you in the ED again!

  5. Thanks for reflecting and bringing your insight full circle back to the kids you care for every day, including your own!

  6. As teachers and learners in an academic health center, we sometimes forget just how much our patients teach us every day. Stories like Sara’s provide us a poignant reminder of how important our patients are. On behalf of the pediatric training program, a heartfelt thank you to our patients for teaching us each and every day.

  7. I am so glad you shared this!

  8. As an R.N. who has spent many, many years as a bedside nurse and an I.V. nurse, I can’t tell you how much anguish I have felt when I am in an impossible IV start and have to poke more than once! Being a compassionate human I am frustrated when I know a child needs a central line, not an IV, but I am still asked to try. I wish we had a better, more compassionate system!

  9. Thanks for sharing this Sara. It is a really important reminder for all of us.

  10. Thanks for sharing your insights, and for honoring your child by reflecting on your experience and allowing it to influence your approach as a care provider. I wish the best for your family and all the family’s for which you care.

  11. Yes as a patient this is how the picture feels to to us. I am an adult who has a major illness and I have a job with children everyday. Be kind and humble and remember we are not a number on a page or time we take from you. We are freightend and don’t know what has happened to our world.

  12. Your daughter is beautiful! Congratulations! I always thought you took extremely good care of our family, and you went out of your way to make time for us. You were already very compassionate, even pre-Maddy. It’s nice to read your thoughts, and I’m sorry that you’ve had to go through some challenges. A big hello from K & S, the Allen twins!

About the Author

Tamara Hargens-Bradley is Associate Director of Media Relations for Oregon Health & Science University, OHSU Doernbecher Children's Hospital. She is the editor of the Healthy Families blog.
Doernbecher Children's Hospital

Doernbecher Children’s Hospital

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