Three Things I Wish I Knew: Advice for Parents of Infant Burn Survivors

When I received a text that our nanny had an accident with our 8-month-old son, I had no idea the severity of the situation or the way our entire family’s future was about to change. But as the story unfolded and the hours progressed, we went from an emergency walk-in to the doctor’s office, to the hospital emergency room, to checking into the Burn Intensive Care Unit (BICU). 

Last month marked the two-year anniversary of my son’s burn. Even after all of this time, I remember the moments like it was yesterday. 

 

Our son was the youngest one in the BICU. Beyond adjusting in the hospital, with IVs, medical tests, and excruciating burn debridement each day, we also found ourselves trying to help a pre-verbal, tiny human adjust to this painful reality. We got creative with turning the hospital room into an infant’s play place, found fun stroller rides to take around the hospital and were grateful for an amazing team of professionals who helped play with, encourage and champion our little guy. 

As a parent of an infant burn survivor, there are several things I wish I knew at the start of this journey and I hope my story will help others who are in the process of navigating life as a parent of a burn survivor.

 

Guilt Lies

One of the first things we learned from our social worker, parent support groups, and other families who had walked this journey was that guilt relentlessly pursues parents of burn survivors. There is something inside of us as parents that seems to shatter under the weight of pain that comes with watching our children suffer from a burn injury, whether the parent was away at work (like I was) or home with the child. We feel like we should have prevented this because we are supposed to protect, nurture, and guide our children. What did we do or not do? What could have stopped this? We replay the day, hour, and moment over and over again. But the reality is, accidents happen. I can’t always protect my son, and this is the hardest truth I’ve held as a parent. And as I sat in the BICU, hearing his screams, holding him as he sobbed and praying by his bed – this truth was more than I could handle.

For months following the accident, I would only sleep a few hours each night. I was determined to always be there for my son, never “gone” when he needed me. When I did sleep, I had horrific nightmares. And during the day, memories of the accident flooded my mind. I saw the burn as a constant reminder that I failed my son. I was convinced as he grew older, he would believe this too. These days were hard and dark.

 

Parents Hurt Too

With a lot of help and people who walked the journey with me, I learned a few things about this debilitating guilt. First, parents of burn-survivors often experience Post Traumatic Stress Disorder (PTSD). PTSD can also cause high levels of anxiety, causing people to feel like they have to always “be on” or another accident is constantly about to happen. The body begins releasing a chemical called cortisol. Usually, cortisol is produced when there is a need for the body to respond to an immediate problem or a threat. But with PTSD, it keeps being released with no outlet or action for you to take. It’s debilitating in every sense of the word. With PTSD, you’re emotionally, physically, and mentally exhausted all the time, and it feels like it will never get any better.

The truth is, parents are also hurt when their child is burned. Giving attention to your own mental, physical, and emotional health is critical to helping your entire family navigate the process and eventually thrive again. It took me some time, but I came to realize my son would make sense of his burn based on how I responded to the situation, including how I cared for myself. It’s important to get the right help, to take moments for yourself, and to realize just as the scar is going to take a long time to heal for your child; you may need a while to heal too.

 

You’re Not Alone

They say the first year is typically the hardest – it has the most appointments, medical procedures, and the burn is still going through its healing process. There are so many unknowns about how or if the burn will heal, what the functionality of your child will be as they heal, and whether there will be more surgeries ahead. Some days during the first year, it felt like the burn governed our entire life. From taking time off work to go to the burn clinic, or timing the frequency and length of burn messeges, it became our everything and felt like a constant reminder of our loss and pain. But through this, we found an amazing community. 

For example, there was an adult who reached out to me, who also had been burned as an infant. He shared with me his story, his journey of navigating the realities while growing up and even how deeply he loved his parents and felt for their pain. He let me know that when or if my son needed to talk, he would be there. 

We also connected with other families in the burn community, sharing stories about our children, empathizing and championing each other’s journeys, all while reminding each other that there is more than the burn and our children would overcome these days. Our community also stepped in to help, bringing meals, sitting with our little one in the hospital so we could step out for a few moments and creating a safe place to process and share our story. 

 

As I mark the two-year journey of life as a parent of a burn survivor, I am still working to hold on to these truths fully. Guilt still gets me some days. I still have to work on intentional self-care and awareness. And I, for sure, still lean deeply into my community. Above all, I remember - my son overcame. The burn does not define him, and it does not define me. He is thriving and happy, with a future built on the resilience, courage, and strength he had to exercise from such an early age. 

 

Find more resources for parents and children here – Including Care for the Caregiver and School Reentry. If you need additional support or resources, please contact Phoenix Society. 

Connect with local support through a Phoenix SOAR (Survivors Offering Assistance in Recovery) Hospital. In burn centers across the country, Phoenix SOAR provides peer support to burn survivors and their loved ones.

 

Carolyn Mae Kim, Ph.D., APR is a mother of an infant burn-survivor who is now a happy and adventurous toddler. She is a university professor of public relations, national author, speaker and consultant.