A PH Sibling’s Journey From Childhood to Adulthood

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by Colleen Steele |

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Parents of children with pulmonary hypertension (PH) commonly express concern about the emotional and developmental effects on their healthy offspring.

They worry about how their healthy children deal with feelings of sadness and fear. They stress over sibling rivalry triggered by feelings of unequal parental attention. And they’re concerned about how exposure to the PH experience will influence the type of person their children will grow up to be.

My son Aidan was only 7 when his brother, Cullen, was diagnosed with PH at 8 years old. I wrote about what that was like for Aidan in a previous column titled “The ‘Healthy’ Sibling’s Struggles with PH.”

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On Dec. 20, Aidan will turn 21. I hope other parents of PH children will find encouragement in Aidan’s journey to becoming a responsible and compassionate adult.

When I asked if his brother’s PH and transplant influenced the man he has become, Aidan replied, “When Cullen was diagnosed, I was young and didn’t understand everything that was going on, but over time I learned a lot about his condition and about life. It upset me that our lives weren’t like everyone else’s, but I had to learn to be OK with that. I had to learn to appreciate everything that we had, and have, because there are people with a lot worse.”

Although he credits his dad and me for taking care of him and his brother, Aidan took on a lot of responsibility whenever Cullen received medical care out of state.

Several times a year, we would drive to Lucile Packard Children’s Hospital in Palo Alto, California, leaving Aidan at home in Washington state with family or friends so that he wouldn’t miss school. When Cullen received a heart and double-lung transplant in 2014, we remained in California for four months while Aidan and his dad returned to Washington to resume work and school.

“During these long separations, I learned to do things on my own, which taught me to be independent,” Aidan said.

I worried how growing up as a sibling of a seriously ill child would affect Aidan as an adult. But all things considered, he has turned out exceptionally well. I asked him for his thoughts about how he grew up, and what advice he might offer to other PH parents.

Cullen and Aidan fought a lot as children, but Aidan points out, “Kids are going to be kids and fight.”

He remembers fighting with Cullen practically 24/7 and admits that even if his brother didn’t have PH, he probably would have done everything the same, except he “wouldn’t have gone as easy on him!”

In the past, Aidan struggled to figure out why our lives were the way they were.

“At some point, I realized everyone has memories of childhood challenges, but everyone also has to grow up and learn to cope with their anger, or they will be grumpy, miserable people for the rest of their lives.”

Even before Cullen’s PH diagnosis, Aidan already did plenty to help others. He received the “Most Helpful” award in kindergarten. As an adult, I still see Aidan go above and beyond to help family, friends, and even strangers, making me wonder if the PH experience enhanced the humanitarian part of his personality.

Aidan once stopped his car near a hospital crosswalk to assist a man in a wheelchair struggling to get up a steep incline to the sidewalk. Even with Aidan’s help, he was making no progress, so Aidan lifted the man and his wheelchair and placed them safely on the curb.

Aidan couldn’t understand why no one else got out of their vehicle to help.

When asked about it, Aidan said, “Everyone has moments in life when they need someone to give them a helping hand. You may not always be able to help, but at least you can say you tried, and that goes a lot further than not trying at all.”

PH siblings | Pulmonary Hypertension News | Collen's son Aidan, soon to be 21, poses with his girlfriend, Sally, in front of the nighttime skyline of Seattle.

Aidan enjoys a recent evening with his girlfriend, Sally, at Alki Beach in Seattle, Washington. (Courtesy of Aidan Steele)

Aidan has a wonderful girlfriend, loyal friends, and a job he is proud of, but he has gone through a lot of blood, sweat, and tears to get where he is now.

COVID-19 lockdowns derailed Aidan’s plans for the future, but he recovered well.

“I am proud of how far I have come. I lost a lot last year, but I am glad everything happened the way it did, or I wouldn’t be where I am today,” he said. “I am a staunch believer that everything happens for a reason, and even when times are at their worst, they will eventually get better. You have to work for it instead of giving up.”

As for Cullen, Aidan said that, “Growing up we had our ups and downs, but now I consider him as not just my brother but my friend. I finally realized he’s not that bad to talk to.”

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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.

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