When Kai was born she seemed like a normal, healthy baby. She was full-term and weight almost 8 lbs! She was a little jaundiced, and we were told to bring her home and “stick her in the sun”. As time wore on, her jaundice worsened. The pediatrician sent us for blood work, which led to hospitalization and, eventually, being medevacked to a pediatric liver transplant hospital in Washington, DC. It was there that we learned Kai was in end-stage liver failure and that she would require a liver transplant to survive. She was just 3 months old.
Fortunately, Kai’s father was a match. They successfully underwent the 7 hour surgery to remove 25% of his liver and transplant it into her. This was not the end of the journey, however. Kai had some complications, and required another major, life-saving surgery the following morning. Over the course of the next few years she spent much of her time in and out of the hospital. Eventually, Kai’s condition became more stable and we were able to assume a more “normal” life.
Around the age of 3 years, though, I noticed she was having more extreme reactions to things than her peers. She would cycle through stages of what seemed like manic hyper-activity in which she would run around screaming and laughing, leaving a trail of destruction in her wake. A broken lamp at her grandparent’s house. An unwound roll of paper from the doctor’s table. Once she even tried to climb out of her 2nd story bedroom window. Often, these behaviors would become exacerbated surrounding doctor’s appointments and medical procedures. The methods of discipline suggested by all the latest parenting books and blogs had little no effect. They often seemed to agitate her more. She began to have nightmares and trouble sleeping, as well.
To make matters worse, I felt like I had no patience at all. I was often irritable and quick tempered. I felt angry for no reason. I couldn’t understand why I couldn’t just relax and enjoy motherhood. I lost interest in a lot of the activities and things I used to enjoy, as well. Sometimes I would experience waves of anxiety, and even terror. Sometimes the terror would be accompanied by terrible abdominal pain. It felt like I was crawling in my own skin. I succumbed to waves of exhaustion during which it was a struggle to even lift my arm over my head. I felt like I was swimming against a strong current all the time and fighting to keep my head above the water.
I began having nightmares, too. Memories and flashbacks from when Kai was sick. Sometimes they would pop into my head when I was awake. I would shudder and cry when an ambulance drove by, remembering my tiny yellow baby on her ride to DC, not knowing if she would survive. There were certain areas of the hospital that I avoided because the memories haunted me.
It wasn’t until years later that Kai and I were both diagnosed with Post Traumatic Stress Disorder (PTSD) and generalized anxiety disorder. As complications of PTSD, I was diagnosed with depression, chronic fatigue and panic disorder. Kai also developed a phobia of needles.
I’m happy to say that we are both considered to be in remission after years of counseling and therapy. Kai is now 11 years old and doing well.
There is no shame in seeking help if you are struggling emotionally after your child suffers a life-threatening or traumatic medical event. It can be life-altering for both you and your child.