Life Changes After my Cardiac Arrest

A survivor’s insight on what you may encounter afterward

I had my cardiac arrest at 16 years old, and it changed and uprooted my life completely. After my event, I underwent a series of shifts in my appearance, physical abilities, and mental stability. I was in complete denial of what had happened to me, which led to me flushing my medication, ignoring the doctor’s orders, and feeling socially isolated. While your child or teen may be completely different and may not relate to any of the changes listed below, I hope that this will serve as a guide to help you understand, from the perspective of a pediatric survivor, some of the challenges your loved one might face as they recover and return to their routine before their event.

Physical changes

Chest pain: After cardiac arrest, chest pain is common. This pain can come from the CPR given to save them, the shocks from an AED, or surgery for an ICD (implantable cardioverter defibrillator) implant. An ICD can also cause soreness and weakness because it’s a foreign object in the body. It is important to be patient with your child and follow the recovery plan the doctors provide.

Scars: Scars from surgery or trauma may become more noticeable over time. They might be raised, darker, or more pronounced. It is normal for your child to have trouble accepting these changes, and they might want to change how they dress to feel more comfortable. This can help them feel a bit more in control during a difficult time.

Weight changes: Cardiac arrest can affect your child’s appetite, causing them to eat more or less than before. This can lead to changes in their weight, which may be hard for them to accept, especially if they were very active before. Long periods of rest after the event might also lead to muscle loss.

Weakened physical abilities: All these physical changes can make everyday tasks harder for your child. Simple things like brushing their hair, bathing, changing clothes, or carrying items might become difficult. It is important to be patient and encourage them as they get used to their new physical abilities.

Cognitive challenges

After going through something as scary as cardiac arrest, it is normal for your child to have emotional and mental challenges, too. They might feel anxious, sad, or even show signs of PTSD (Post-Traumatic Stress Disorder). Keeping an open line of communication with your child is key so try to let them talk about how they are feeling. A form of communication that may prove effective is active listening, asking questions, and reflecting. By lending your child a listening ear, reflecting some of their emotions to them, and further inquiring about their concerns, your child may be able to work through their feelings quicker and build confidence in their familial support system. Therapy can also be very helpful in navigating these changes, providing support for both your child and your family as you adjust to this new reality.

Survivor guilt: Survivors often feel guilty and start believing that they don’t deserve to be alive as not all get the same chance. Since cardiac arrest has such a low survival rate, there are more losses than survivors, which can make these feelings even stronger. Your child might wonder why they got a second chance when many others didn’t. Therapy can help by giving them a safe space to talk with a professional who understands these emotions. On a personal level, I found that getting involved in activities related to cardiac arrest helped me cope. Knowing I was helping others have a chance made the guilt feel lighter.

Taking medication

Taking medication every day can be a constant reminder to your child of what they went through and how they might be different from their friends. If they need to take medicine at school, it could make them feel even more self-conscious since classmates might ask questions that make them uncomfortable. Finding the right medication and dosage can take time, which means your child might have to try different medicines. This process can be frustrating, especially because some medications have side effects like dizziness, tiredness, a slow heartbeat, body aches, and poor blood flow. Providing emotional support during this time is very important, as it can be a long and tiring process for your child.

Social integration

Sports: If your child can still participate in physical activities, they might not have any issues, but if they cannot, it could make them feel left out. A lot of social interactions among kids happen during playtime, whether on the playground or as part of a sports team. Not being able to join in can be frustrating and isolating. To help, you can find other activities that are safe for your child. These can vary depending on their health, but finding new hobbies can make it easier for your child to adjust to their new normal.

Denial: Your child might want to return to life as it was before the cardiac arrest, which could lead to denial. This might show up as refusing to take medication or ignoring physical limitations, like trying to exercise too much. It is important to talk to your child about these behaviors and help them adjust to their new reality. Additionally, reaching out to other survivors may be beneficial, as they can relate to your child’s experience and share helpful advice to both your child and you. A helpful network that provides these types of connections is Parent Heart Watch.

Missing School: Cardiac illness is not something that goes away quickly, so your child might miss school often due to bad days, doctor appointments, and follow-ups after their cardiac arrest. This can affect their education and make it harder for them to fit in with peers. If missing school becomes a problem, it is important to talk to teachers and school staff to ensure they are patient and understanding. By keeping communication open between your child, their teachers, and the school, your child may have an easier time getting back into the routine of school.

Finally to my own story…

After my cardiac arrest, I experienced everything listed above. I have a footlong keloid scar that runs vertically across my chest accompanied by the bulge from my ICD, which made it hard for me to come to terms with my appearance. I lost a dramatic amount of weight and muscle tone and had to stop playing sports altogether. I changed medications and dosages over 27 times, taking over a year of experimentation to find something that worked. Additionally, I struggled to reintegrate myself with my peers, as many of my friends stemmed from sports, which is why I continuously disobeyed doctors’ orders and was in denial for quite a period of time.

One of the things that helped me during this time was finding a community of people who had been impacted by cardiac arrest. This is how I was able to shift my mindset and adjust to my life as a survivor rather than a victim. Other survivors became my mentors and gave me advice and guidance at a time when I needed it the most. Additionally, my family and I underwent therapy with a child psychologist that allowed us to openly communicate about our troubles regarding my event. While for my family it was more related to PTSD, for me, it was more geared towards day-to-day adjustments.

Now, four years after my cardiac arrest, I have adopted the motto “Everything happens for a reason” and “Time heals all wounds.” I have found solace in involving myself in campaigns geared towards increasing the survivorship of cardiac arrest, and I am even studying Neuroscience at a university with the hopes of becoming a pediatric cardiologist one day.

Thank you to our contributors

Julieta Valdes & Janice Tijssen