According to the Anxiety and Depression Association of America, somewhere between 40 and 70 percent of caregivers exhibit signs of depression. Caregiving is an isolating task that is often accompanied by unrelenting physical, emotional, and financial stress, an almost inevitable recipe for mental health problems. In addition, researchers are also beginning to identify post-traumatic stress reactions in caregivers. Watching a loved one suffer through repeated health emergencies can cause depression and anxiety well after the crisis has passed. I count myself among the mothers who have experienced a debilitating reaction to my son’s medical trauma. Note: I am purposely avoiding the label Post-Traumatic Stress Disorder. While PTSD is one possible outcome of severe trauma, there is also a spectrum of other reactions that, while serious in their own right, don’t meet the criteria of that particular diagnosis. I worry that the overuse of the term PTSD minimizes the severity of the actual disorder. Under full disclosure, I myself live with sometimes severe depression and anxiety related to trauma, but I do not have PTSD.
BECOMING A CAREGIVER
My son Bobby was born with an unbalanced atrioventricular canal defect, an unfixable problem that prevented his blood from being properly oxygenated. He lived with depleted oxygen levels until he had his third palliative open heart surgery at the age of three. He’s doing well now at the age of eleven, but we know that a heart transplant and a shortened life are likely in his future.
I work hard to appreciate these years I have with him. I also am pragmatic about the fact that his medical journey has taken a toll on my psyche, and I need to care for my mental health even as I meet his needs.
In Bobby’s first year of life, my partner Valerie (who gave birth to Bobby) sometimes ruefully pointed to our unused copy of What to Expecting When You’re Expecting, asking where she might find the chapter on dealing with heart failure or nursing an infant who takes sixty shallow breaths a minute. We were at least nominally prepared for the usual stressors of new parenthood, but not for going home with the instructions to head to the emergency room if/when Bobby’s lips started to turn blue. Our focus/obsession in those first weeks was to help him gain as much weight as possible before surgery was mandated. More weight translated into a better chance of recovery.
On our first drive home, I insisted that Valerie drive on the sunny side of the street because I could not differentiate between Bobby’s lips turning blue and a shadow on his face. The first night I woke him up more than once by shining a light near his crib so I could check his color. During the day we passed him back and forth, holding him up to the light, asking each other if he was blue. We asked our doctor about electronic monitors and were told that the false positives would be more anxiety producing than our current method of oversight. Future hospitalizations confirmed this. Bobby was not in danger of a sudden event like cardiac arrest, “just” a slow reduction in oxygen levels.
At Bobby’s three-week cardiology check up his doctor announced that he was in heart failure. I assumed that meant a return to the hospital, but no, there was nothing to do but add a diuretic to his medicine regimen and continue to watch for color changes. After another week of struggling to feed Bobby and watching his stomach muscles retract into his ribs with every labored breath, we took him into the emergency room even though the much discussed color change wasn’t present.
I could not understand why Bobby was home with us. We weren’t doctors. I didn’t know how to take care of a child in heart failure. Sensing our near panic, our cardiologist admitted Bobby. He stayed in the hospital for the next ten days, gaining a nasogastric tube and having his weight and oxygen levels closely monitored. However, I soon realized that Bobby wasn’t receiving any care that we couldn’t manage at home, and that the longer he was in the hospital, the more likely it was he could catch a life threatening infection.
We had a great medical team around us, but I had to accept that Valerie and I were going do the heavy lifting of keeping Bobby alive. I had to develop a tolerance for keeping a very sick child at home and absorb the responsibility for deciding when we needed more help from his doctors. I had expected sleepless nights and frustrating days when taking care of my child, but I didn’t expect the stress of making these critical medical decisions for him.
I learned how to snake the nasogastric tube down his nose and into his stomach, maintaining my composure even as he fought. I can still picture that weak little baby screaming as the tube snaked its way out of his mouth instead of down his esophagus. I started over, praying for success. However, even when the tube feedings ran smoothly, Bobby threw up almost all of his twelve daily feeds. The warm spit up soaking into my shoulder and back reminded me of how far we were from helping him gain the weight that would help him survive his surgeries. I feared my ineptness was killing my son.
THE ONSET OF TRAUMA
There were many scary times. On the face of it, Bobby’s second open heart surgery was a success, but for some reason his lungs couldn’t recover from the trauma. His oxygen saturations (100 in a healthy person) were often in the 40s and 50s. I even watched them fall into the 20s during a failed extubation. After multiple tests produced no answers, his heart surgeon consulted with his colleagues across the country and came back to tell us that no one really understood why Bobby wasn’t doing better. “Wait and see,” was the best answer he had for us.
Bobby coded while recovering from his third surgery. One morning at about 5am I was sleeping, as I always did, on a pull out chair next to his bed. His monitor beeped, as it did twenty times a day, but this time the nurse rushed to press the red button on the wall that summoned a huge team of doctors and nurses to Bobby’s bedside. I stood in the back of the room, my knees turned to mush, watching the team work through the various protocols. Once the doctors indicated that he was stable, I weaved past the equipment carts to stand at his side, trying to comfort my three-year-old boy who was screaming in terror at the mass intervention.
We held Bobby’s hand as he silently sobbed while intubated. We rocked him through days of sleepless morphine withdrawal. I have restrained him through countless tests, and felt his body sink into mine in relief and exhaustion once the procedure was complete. Even when I could do nothing else for him, I was at least always there.
We let him suffer those traumas because we were convinced that the end would justify the means. I still believe that to be true, but Bobby’s retching sobs at each doctor’s appointment serve as evidence that the emotional pain still resides inside him.
For a long time I denied my own experience of trauma. Many children who are medically fragile deal with more invasive medical interventions than Bobby. Other children with his heart condition do not survive their surgeries. Shouldn’t my gratitude over his survival outweigh my pain? Wasn’t it selfish to consider my own suffering when his outweighed mine?
Of course, none of these things are mutually exclusive and eventually I had to deal with my pain. I was admitted to a residential psychiatric program only months after Bobby’s last surgery. I’d been depressed for well over a year, but I managed to hang on long enough to see him through that final procedure. At the end, I was so burned out by depression and anxiety that I could barely piece together a cogent sentence, let alone process the enormity of my son’s situation.
WHAT DOES TRAUMA LOOK LIKE?
Due to a combination of life experiences, coping mechanisms, and DNA, we all react differently to traumatic events. Comparing our own reaction to other people’s is pointless. Instead we need to accept when a circumstance has become overwhelming for us and find help accordingly.
Most of us struggle with abrupt transitions in our lives. While having our first child is generally a joyously anticipated event, most parents experience some anxiety in the first weeks and months. Every aspect of our being is changed the moment our child enters the world. No matter how much we love that baby we struggle with sleepless nights, loss of independence, and loneliness. Society recognizes the magnitude of the transition and provides an array of supports —grandparents helping with the baby, parental leave, neighborhood meal trains, online support groups. Some people find they need professional help, such as with a postpartum depression diagnosis.
Society is not so open to more violent transitions. I was sexually assaulted as a young child. In the span of twenty minutes I changed from an innocent girl to one for whom the world held the constant threat of harm. I didn’t believe anyone would help me so I told no one. My brain couldn’t process that catastrophic introduction to violence, and so part of me stayed stuck in that dark place for decades. My life severed into a before and after the assault.
Similarly, when Bobby was born his medical circumstances required me to simultaneously process his possible death. Yes, many parents worry about their child getting sick or hurt, but parents of children who are medically fragile experience those feelings in an especially harsh and raw way. I live with the knowledge that a cold that settles in Bobby’s chest could kill him. It’s not an irrational niggling in the back of my mind — it’s a fact.
In addition to confronting our children’s mortality, keeping them alive often requires parents of children who are medically fragile to repeatedly witness and participate in medical interventions that traumatize our children to some degree. We are so focused on keeping our child alive that we don’t have time or energy to compassionately engage with ourselves. This, also, can leave us stuck in very dark places.
RECOVERY – FOR BOTH OF US
I recovered slowly. We were very lucky in that I could stop working and focus on Bobby’s care. My partner and I received an inheritance that eased our financial strain. I spent a lot of hours in therapy. Most importantly, Bobby’s health improved greatly, meaning we no longer faced wave after wave of medical emergencies. Still, I’m forever changed.
I know that he is at the edge of what science can do to help. I already feel the pain and potential complications that lie behind a heart transplant. I don’t have any innocence left when it comes to the harshness of medical interventions. His every downturn takes me back to months of not knowing if he’d survive. I don’t live in the dark place, but a single step can take me back there.
Living in the moment helps. Because my time with Bobby may be short I try to have fun with him every day. I want to live with the assurance that I have enjoyed his presence as much as I could. I’m getting better at letting the little things go.
Beyond that, I have no easy answers for how to live with this. I have spoken with enough parents of children who are medically fragile to know that I am far from alone. I am heartened that trauma in our community is now being acknowledged by the scientific community. I think it’s important that we start to admit these feelings to ourselves, instead of immersing ourselves in stoicism. Only then can we start to put more social supports in place.