The ‘Healthy’ Sibling’s Struggles with PH

Colleen Steele avatar

by Colleen Steele |

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The siblings of medically frail children grow up fast because they witness harsh realities at an early age. They experience emergencies, hospital stays, medical equipment, and scary treatments, and have no choice but to comply with a long list of limitations, sacrifices, and challenges.

Pulmonary hypertension (PH) turned the childhood of my “healthy” son upside down and had a serious impact on his formative years. As a little boy, Aidan was forced to understand what it meant to have a brother with a life-threatening illness. Naiveté was replaced with a maturity beyond his 7 years. Hiding behind his cute, dimpled smile was worry and confusion.

Prior to his brother’s diagnosis, he was energetic, caring, and wanted to live life to the fullest. PH changed him by intensifying those wonderful qualities. He could have easily become withdrawn and resentful, but he didn’t. Instead, he continued to be an active and fun-loving child, seldom without a smile and always ready to lend a hand to those in need. To outsiders, he appeared to be a normal little boy, but at home, his life was very different from that of his peers.

His brother was extremely ill. Whatever he went through, Aidan experienced as well. PH swept into my healthy son’s life like secondhand smoke. There were sleepless nights listening to his brother struggle to breathe and cry out with chest pains. Even school wasn’t an escape from reality. If anything, the frequency of his absence illuminated just how sick his brother was. When his brother happened to attend, Aidan never knew when a PH crisis might occur; he had to decide whether he would stay with friends or join the family scramble to the hospital.

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When he wasn’t exposed to medical appointments and hospital admissions, he was what he now describes as “left out.” When his brother was diagnosed, the decision was made to seek care from a PH specialist out of state. Our first visit took us away from home for over a month because of extensive tests, procedures, and evaluations as he started PH treatments.

My husband and I made the decision that Aidan should remain home with my parents. We thought it would be better than exposing him to appointments where he would have to remain still and quiet for long periods of time. It didn’t seem fair to put him through all of that and possible emotional trauma as well.

In the future, he joined us on some trips, depending on what was scheduled and whether school was in session. But there were many times he remained home in the care of friends or his grandparents. He acknowledges and appreciates to this day the fact that they took good care of him. He was always surrounded by compassion and understanding, but inevitably, he also felt lonely, helpless, and confused.

What I hope he understands is that we felt the same way without him. I know he often felt secluded and understandably jealous of the attention his brother required, and I wish I could have prevented him from feeling that way. However, I think my obsession with trying to protect him is where mistakes were made.

He wasn’t told everything because we didn’t want to scare him. We didn’t always bring him with us because home is where we thought he could live with some normalcy. But how normal is it to be without your family? His brother was only a year older and was managing all that was happening around him with amazing maturity. When I think about that, I realize that we underestimated Aidan’s ability to do the same. We probably could have explained things in more detail and allowed him to witness more than he did.

The PH years took its toll on our family, but for four months post-transplant, our already emotionally spent family was divided in half. I remained in California with my son during his recovery and my husband and Aidan remained at home in Washington to resume work and school. We spoke on the phone frequently, and a friend surprised me by flying Aidan out for a visit. But the reality was that he missed his mom for four months.

Today, the boys are young adults and thriving. Together, they graduated from high school and are about to start college. Their relationship survived all that they have been through and evolved into a close friendship. Aidan grew into a hardworking, loyal, and compassionate man whose kindness supersedes any remaining feelings of loss experienced as a child.

Aidan recalls that his brother never gave up. As a result, he believes, “If things are bad, it doesn’t mean that they are going to stay that way.” His advice is as follows: “Life is too short to waste what time you have. Learn to appreciate each moment.”


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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


Kari Hedin avatar

Kari Hedin

Thank you for this article; it made me cry. I often wonder how my son’s PH impacts my daughter. We have left her home during visits out of the state for PH-related hospital visits. I appreciate the perspective of realizing that the sibling can handle more than the parents think they can.

Colleen Steele avatar

Colleen Steele

Kari, I'm sure that your children know how much you love them both and that is what matters most at the end of each day. I still think that leaving the sibling home with trusted family or friends is not a bad decision to make, and often necessary. The tougher decision is how much to tell them once you return home. I realize now that the abbreviated version wasn't enough for my son. Despite the experience, or lack of, he still turned out to be a fine young man. PH will have an impact on your daughter, but so will your love for her.


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