My son still struggles with PTSD from his childhood medical trauma
Severe, post-surgery pain brought back difficult memories for this teen
Trauma comes in all shapes and sizes. People often associate trauma with physical injuries, such as a horrific accident, amputation, or burn wound, but it can be caused by many other situations as well. For example, early childhood trauma can develop when kids grow up with an abusive parent. Trauma could also result from fleeing your country as a refugee, or experiencing physical, sexual, or emotional abuse. But there’s one type that many people don’t understand: medical trauma.
My youngest son, Caeleb, is 17 and has severe hemophilia A with an inhibitor. Unfortunately, his life with hemophilia is not textbook; every complication possible seems to have found my son, and the years of constant bleeding into his right knee and ankle caused severe, irreversible damage.
Caeleb recently had surgery to debride his ankle, or remove damaged tissue from it. I thought it’d go smoothly — until it didn’t.
The surgery was outpatient, meaning Caeleb went home the same day. I followed the instructions regarding pain medication after we arrived home, but the entire night brought tears. Caeleb’s unrelenting pain worsened, so I called an ambulance the following morning to take him back to the hospital. After a few hours, doctors were able to start getting Caeleb’s pain under control.
What scared me the most was seeing my son’s demeanor change in moments of uncontrollable agony.
The International Society for Traumatic Stress Studies (ISTSS) defines medical trauma as “a set of psychological and physiological responses to pain, injury, serious illness, medical procedures and frightening treatment experiences.” Traumatic events don’t always result in a diagnosis of post-traumatic stress disorder (PTSD), but in Caeleb’s case, PTSD is alive and well after all the hospitalizations and medical issues he faced as a child.
Caeleb is no longer a kid in elementary school whom nurses need to hold down to start an IV. He’s now a young man facing different complications — but the moment he walks into a hospital, his anxiety rises. This issue is exactly what happened after his recent surgery.
When Caeleb is in the throes of PTSD, it’s as if a circuit breaker flips in his brain, not allowing information to be received. There’s too much for him to handle, and he shuts down. While he’s a reasonable young man, seeing needles raises his anxiety and triggers his PTSD. His demeanor changes when his pain is at a 12 on a scale of 1 to 10.
As Caeleb’s parent, it’s frustrating and frightening all in the same breath. While I want to tell him to calm down, I don’t even consider it because he cannot hear me. During these times, he transports to another world, dissociating as a protective mechanism.
The ISTSS reports that reactions to medical procedures and traumas often resolve independently. However, “15-25% of children experience persistent traumatic stress.” I want my son to be one of the 75%-85% that don’t struggle with PTSD for their entire life.
What can be done for young people who suffer at the hands of medical trauma and PTSD?
First, talk to your child’s doctor about your concerns. Second, ask for a referral to a mental health specialist. Third, reach out to others whose children have similar medical issues. Get as much information as possible and walk alongside your child to find help.
Asking for help equals strength.
Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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J.A.
I am age 72 and continue to have PTSD symptoms from age 3 when heart surgery for babies/young children was new. In the 1950s there was no preparation whatsoever for the family/child in advance. My parents were instructed to lie to me about where we were going. There were no children's wards. No explanation of X-ray procedure before I was strapped to a bed then upright to a cold metal plate for another picture. No anxiety medicine before being wheeled down the long long hall to surgery. No post-pain medicine, as they didn't believe young children's brains were developed enough to really feel pain. 10 days in the hospital. No parents or visitors allowed as "it would upset the child." So you see that things are changing - but too, too slowly.