What To Expect When You Never Expected This: Navigating Burn and Scar Care for an Infant

What was seemingly a normal day, quickly became one of the worst I’ve ever known. Seeing my little 8-month-old son hooked up to monitors and IVs, my heart was beyond broken – it felt shattered. I tried to make sense of what had happened. I replayed it again, and again, and again. I had been in a meeting at work when I was notified that our nanny had an accident that resulted in my little one being badly burned. 

My husband and I learned that our little guy needed more protein than ever before to help his body heal from the burn, and yet, due to the trauma, he was refusing to eat anything. We met a slew of medical professionals, responded to numerous questions, and tried to set up a treatment plan for the situation we never saw coming. To say it was overwhelming is an understatement. 

We’ve just passed the two-year anniversary of our little guy’s burn. In the days and months during the healing process, I often searched for tips from other parents of infant burn survivors. I was anxious for any insight into how I could help my little one recover … and to be honest, I was desperate for someone to help me understand how I, too, would be able to recover. Looking back on our experience, I would like to share the following five tips that I hope can help other parents who are walking this journey with their little one.

1. You are the best advocate for your baby: The guilt that parents of burn survivors feel is, at times, debilitating. Especially in the initial days following the accident, it can make you question your parenting abilities and competence. Don’t listen to that voice. Here is what’s true: YOU are the best advocate for your little one. You know your child, and you can speak up for your child in a way no one else can. 
   
   We were grateful for our Child Life Specialist. She helped us ask our medical team about things like carrying our child to the operating room and staying with our child until it was time to begin the surgery. We asked our team for their assistance in scheduling procedures around key activities like naps and feedings. Infants are preverbal and, in a situation like this, one of the best ways to love and nurture your baby is to be their voice in a situation that is so unfamiliar. Help your child by advocating for routine and consistency as much as possible.
   
   

2. Ask lots of questions and find options that work: This is completely new territory, and with so many new terms, processes, and plans being implemented, you are likely to have many questions. It can be helpful to keep a notebook or have a place on your phone to write down questions. Whether you’re in the BICU or with the team in the clinic during recovery, the medical team is there to help – and we found they were our greatest champions and became our family. They were able to help us with any question, big or small. For example, we didn’t realize we could ask for a high chair, but it made feeding baby food so much easier. We also asked about toys, and staff was able to provide mats from the physical therapy room so that our little one could crawl and roll while playing with toys without getting hurt on the hard floors. Those mats also made it possible for the physical therapy team to come to our room to work with our son, keeping his environment more familiar and comfortable. We asked questions about common things to watch for, how to help our son learn to  crawl correctly in light of the burn, and numerous questions about surgeries and recovery times. No question was too trivial or obvious. 
   
   

3. You’ll face unique challenges – but you’ll find equally unique ways to navigate them. Infants tend to make burn and scar care just a little more complicated. For example, they tend to be quite adept at pulling off bandages and other pieces meant to help them. After surgery, our little guy was just learning how to sit on his own, so even though the cast on his hand was tiny, it would cause him to topple over because he couldn’t balance well, and he kept hitting himself with it. For me, panic set in less than 24 hours of being home when he literally threw his cast off, leaving his new skin graft exposed. We rushed back to the emergency room and ended up having his hand put in a splint with gauze since his arm was so small. 
   
   We also had to get creative when it came time to do scar massages. After all, he wanted to be rolling around and playing, not sitting nicely as we worked on his hand. To help keep our entire household sane and happy, we turned burn massages into games and wove them into our day. We played “peek-a-boo” by holding his hand and massaging it while we held it, and we practiced standing by holding one hand a bit more than the other so that it could be massaged, and we tried to make it fun.
   
   As parents, it can be daunting to manage all the elements of recovering and healing. When infants add their unique challenges to the process by pulling off bandages, teething through silicon, or any other number of unexpected events, try to think of a creative way around it. We tried to figure out what our little one would do naturally, and worked our scar care around those behaviors.
   
   

4. People will interact with your baby differently than before…and that’s okay. One of the hardest parts for me was going out in public after the burn. The first few weeks after the accident, our little guy had a bandage on his head, which was the donor site, and on his hand where the burn had occurred. When we were out, people would come over and immediately make sad faces and say, “ooooh, what happened to the poor guy?” One person even mentioned how he was “no longer factory perfect.” Complete strangers would come up and grab his hand (which was bound in a red sock to help keep the brace/bandages protected both from the elements as well as his endless sucking on his hand). 
   
   Knowing that infants take many of their cues about the world from the tone and facial expression of others, I found myself frustrated by these interactions. I didn’t want him to be seen as someone to be pitied. To me, he was an fighter and a champion. The more these types of interactions happened, the more I realized I needed to find a way to navigate them. Beyond simply responding to others, I also wanted to model for him how to respond, and I wanted him to learn by my example that he was brave and strong. 
   
   Our social worker helped provide a roadmap for responding to others when she taught us skills based on Phoenix Society resources. This included four very important steps, including rehearsing our responses. First, address the question everyone has on their mind – what happened? I kept it brief and would say, “He was burned. …” Second, move the conversation to the current state and his progress “…but he is doing better now.” Third, I affirmed how great my child was doing (so, even in his preverbal state, he would know that I was proud of him) by saying, “We’re so proud of how he is doing” or “He is such a champ, though he is quite the adventurous spirit!” Fourth and finally, something I found to be critical, was remembering my nonverbal communication. I would look them in the eyes and smile. I would invite interaction from others, but I would also reframe the conversation and recast the tone of the discussion. Thus, these four steps helped me leverage verbal and nonverbal cues not only for strangers, but also for my little infant son to know that he was not someone to be pitied but someone to be admired.
   
   

5. Embrace the new normal. In total candor, I did not do well with this. In fact, for a while, I shaped my entire life around the accident. When we returned home after the BICU, I was plagued with guilt. I never wanted my little one to be alone again, so I wouldn’t sleep so that I could “always be ready” to help him. I was concerned about the damage of the sun on the scar, so I kept him inside most of the time, trying to ensure that the recovery would go smoothly. These and a million other habits ended up wearing me down. It was an unsustainable style of living, largely because it was rooted in feelings of guilt and shame. Infants likely will not remember the accident. But they will remember the patterns you establish in how you interact with them and others, and they will learn from how you react to the situation. Your response shapes their long-term flourishing. When this reality sunk in, I realized I needed to embrace our new normal – a normal that included having an infant burn survivor but not one that was centered on that reality. My husband and I began going on dates again. Let me tell you, the first time I left our little one with someone else after the burn was incredibly hard. We went out for only 60 minutes and gradually extended our time away. We also re-established schedules such as all of us being asleep, or spending time in the park, or eating meals as a family that were balanced (even if it wasn’t the favorite flavor of our little guy). In the end, embracing and shaping a new normal was crucial to not only help our baby thrive, but also to help our family as a whole.

Infants face unique challenges as burn survivors. They are so little and have so much growing ahead. This may mean, like our family, that you’ll navigate things like how to keep them from chewing through burn supplies or how to keep the scar area clean while they roll all over the place. But the courage to grow and develop is what gives them incredible resilience as burn survivors. They push through. They do hard things. They keep trying. And they learn to love and thrive in the world while they do this. The most important thing we can do as parents is to allow them to flourish…and to join them on the journey.

Bio

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 and a national author, speaker, and consultant. 

Resources

Explore more resources on caring for children with burn injuries—and yourself—here.