Tetralogy of Fallot: Giving Thanks on Henry’s Second Anniversary

Our son, Henry, is a patient in the Heart Institute. He has tetralogy of Fallot and had open heart surgery on November 17, 2015. He had this procedure when he was five months old to correct some of the defects caused by his condition. We have pursued several opportunities to give back. But what we haven’t been able to do yet, is to tell you, the staff at the hospital, how much you mean to us. 

Henry was born on May 28, 2015 after an uneventful pregnancy and smooth delivery. After his birth, one of the nurses mentioned that he had a murmur. They had us stay an extra day because we were discharging over the weekend, and Henry was fine throughout our stay. By the time we left the hospital I was convinced that this was going to turn out to be something small that just needed monitoring. We were discharged on a Saturday with plans to follow up with cardiology on Monday. 

A Diagnosis of  Tetralogy of Fallot

We arrived at the clinic and met with a team of nurse practitioners and physicians. Henry had an echocardiogram, and afterwards we returned to the exam room to wait for the results. We didn’t have to wait long before our nurse practitioner and cardiologist returned. They brought news that would alter our course. It was terrifying at the time, but when I look back on this memory, it is not the fear and anxiety I remember first. What always registers first is the compassion, professionalism, and kindness demonstrated by the team we met with that day. 

The following months were spent preparing for Henry’s surgery, and on November 17 we arrived for the hardest day of our lives. Truly, handing Henry over to the anesthesiologists outside the operating room doors was the most difficult thing I have ever done. I kept myself distracted as best as I could to keep my mind from wandering over the complications list that we had to review. At almost six months old, Henry’s personality was really starting to appear. The quiet fear hovering at the back of my mind kept asking me, will he return to me the same? 

Henry’s surgery went well. We were told to expect that he would be hospitalized for 7-10 days. He was able to discharge from the hospital three days after his surgery! We headed home, still kind of in disbelief but so overwhelmingly grateful. Throughout Henry’s care, we have had our share of interactions with various members of the Heart Institute and multiple departments in the medical center. From top to bottom, over and over again, our interactions with all of you have been positive, impactful, professional, kind, and empathetic. 

Carrying Us During a Crisis

My husband is a police officer. Law enforcement and other first responders are constantly encountering people in crisis, on their very worst days. As I reflected on our time with you, I realized that this must also be true for medical professionals. When you are dealing with medically fragile children, you are surrounded by families in crisis and working in an environment where emotions are high and stress is at its peak.

What I would like you to know, is that you didn’t just encounter us on our worst day, you CARRIED US. You held us up and supported us and shepherded us through the scariest moments of our lives. You did this with your words and with your actions. 

Although, so often, you only get to see us in crisis, what I also want you to know, is that you are with us in every celebration: 

 

When Henry discharged from the hospital and he was asleep in his own bed that night, I thought of you. 

 

When Henry took his first steps, you were there. 

 

When we celebrated Henry’s one- and two-year post-op anniversaries, I thanked you. 

 

When Henry goes to kindergarten, plays his first sport, wins a big award or a big game, I will think of you.

 

When Henry learns to drive, graduates high school, graduates college, you will be there. 

 

When Henry gets married one day and has his own babies, I will whisper a thank you to you. 

 

Giving Thanks for Henry’s Care

It is thanks to our cardiologist, our surgeon, the staff in the Heart Institute, and all of the employees who have had a hand in Henry’s care, that we get to joyfully watch Henry live out his life any way he chooses. We truly look to you as the people that have given our Henry life.

Thank you for shepherding us through our darkest days with your kindness, with your strong communication, with your professionalism, and with your meticulous patient and family-centered care. Thank you for coming to work every day and doing the work you do for children like Henry. Most importantly, thank you for giving us so much to celebrate. 

To learn more about the Heart Institute at Cincinnati Children’s, please call 513-636-4432 or fill out an online form for more information.

Laura Kohus

About the Author: Laura Kohus

Laura is a pediatric occupational therapist at Cincinnati Children's. She is a Xavier University graduate, has lived in Cincinnati for 14 years, and been a Children's employee for 9 years. She shares her life with her wonderful husband, Matthew, and their sons, William and Henry. She blogs about Henry's Heart at www.tofmama.tumblr.com.

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Comments

  1. Kef November 22, 18:33
    My family also needs to applaud the heart institute. Our son was diagnosed with Tetralogy of Fallot around 20 weeks into my pregnancy. In the end he had many additional medical issues and wasn’t able to stay with us. Even though our story and outcome is different, the time our sweet Landry spent in the cardiac ICU we encountered nothing but phenomenal physicians, nurses, and care givers. After I learned of his passing I thanked the team as much as I could. But, I often wonder if they truly know how thankful our family is for them. I cannot speak highly enough of each of these professionals. So tonight I say thank you, you each helped to take just a bit of pressure off of our heavily weighted shoulders during the most difficult time of our lives. May God bless you.