PH Made My Son Wise Beyond His Fears

My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). He spent much of his childhood in the hospital, talking to doctors, answering endless questions, and experiencing one traumatic event after another. It’s no wonder that Cullen and many other pediatric patients are commonly described as wise beyond their years.

I admit I felt pride when adults acknowledged Cullen’s maturity, but sometimes their words bothered me. Hiding behind his wisdom was a cute, innocent, playful child stomping around in metaphorical adult-sized shoes and begging, “Look at me, look at me!”

Cullen was a happy child and wise beyond his years. (Courtesy of Colleen Steele)

I treasure the memories of Cullen taking our focus off the patient and placing it more on the little boy. Sometimes they occurred during unexpected moments.

To prepare him for anesthesia, Cullen was given a duck call to practice his breathing as they wheeled him toward surgery. Even after we lost sight of him, we could still hear him playing “Jingle Bells” — in June. My husband and I, along with the medical team and every passerby, listened and laughed as it echoed throughout the hospital.

Another example of Cullen’s innocence shining through was prior to one of the many right-heart catheterizations he would endure over the years. Child and family life services specialists used a pig puppet to explain the procedure to him. The piggy asked, “Do you understand why you can’t eat today?” With a proud tone, Cullen replied, “Because when they cut me open the food might fall out!”

I’ve held on to this precious childish logic. The puppet quickly corrected him, explaining that his stomach needed to be empty so he wouldn’t throw up while under anesthesia, and the incision would be very small. He went into surgery the next day a little wiser than the day before.

Cullen was extremely fortunate to have pediatric teams that treated the whole person. They helped him understand his disease, treatments, and the importance of learning how to advocate for himself. They often talked to him like an adult, but they also made time for the child. I am grateful for the many times Cullen’s innocent take on things was enjoyed instead of corrected.

A favorite example of this occurred during a cardiology appointment. Cullen excitedly asked the receptionist if he would be seeing “Jell-O Man.” We had absolutely no idea who he was talking about until the echocardiogram. That is where we found the technician, otherwise known by Cullen as “Jell-O Man,” because of the transmission gel used during the procedure.

“Jell-O Man” visits Cullen in the hospital in November 2009. (Courtesy of Colleen Steele)

It became a beloved nickname used both by Cullen and members of the hospital staff. A friendship ensued, and several times during hospital admissions, “Jell-O Man” would surprise Cullen with a visit and they would play video games. We even mailed out Christmas cards addressed to “Jell-O Man.”

Cullen responded well to PH treatments, but five years after his diagnosis, his health declined rapidly. He was listed for a heart and double-lung transplant, and received the call when he was 14. The day after surgery, I caught a glimpse of the little boy who had survived a difficult journey.

A respiratory therapist who helped prep Cullen for transplant shared that while they looked for another spot to start an IV, Cullen exclaimed, “Anywhere but my feet!” They thought this an odd request. Cullen was about to undergo a transplant, but appeared more concerned about an IV in his foot. When asked why, Cullen replied, “Because I like to wear sandals.”

That reasoning was hilarious, but even funnier was the fact that Cullen never wore sandals and didn’t even own a pair.

This memory is bittersweet, because I know Cullen was serious. An unpleasant childhood memory of an attempted IV in the foot popped into his mind while groggy with sedation. As children often do, he came up with a creative excuse to get out of what he believed would be a bad experience. It was a final farewell to Cullen’s tug of war between thinking like a child and being wise beyond his years.

If you are a parent and caregiver to a child diagnosed with PH and concerned that their innocence will be lost to the disease, I assure you that it won’t. Many of the cute things they say and do will take place in a medical setting, but that shouldn’t make them any less precious. Enjoy the moments and write them down so you can appreciate them even more years from now.

I think this quote from an unknown author best describes how PH children think and live: “We don’t need to be wise beyond our years. All we need is to be wise beyond our fears.”

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.