When You Know: Transitioning through Palliative Care to Death

My son passed away January 22, 2020 at 4 ½ years old. During his lifetime I spent hours poring over articles in Complex Child. It helped me feel less alone in a very isolating situation, validated my feelings, and allowed me to become a better advocate for my son. So now it’s my turn to share my experience based on the lessons I learned through my son’s life and death.

Jack’s Story

My son, Jack, had intractable epilepsy as a result of an ARX gene mutation, dystonia, and a host of respiratory complications. He became more and more complicated as the years passed, and that put me in the role of full-time mom, caregiver, medical decision overseer, schedule maintainer, equipment manager, insurance warrior, and the list goes on.

No matter how many harrowing experiences we had through the years, whether it was due to an aspiration pneumonia or just a really terrible cold, Jack would somehow get through it and go right back to being the awesomely happy, laid-back, and peaceful soul he was.

But something changed in the last six months of his life. A series of viruses and an aspiration event or two seemed to completely wipe Jack out. We spent more time in the hospital in the last year than we had his entire life, and we had previously held some pretty long inpatient record stays when he was a newborn and when he received the ARX diagnosis.

I started to feel a weight on me that I couldn’t shake. I had a harder time seeing the light at the end of the tunnel that I was always able to find even in the midst of a long illness. And more importantly, I could tell that Jack was trying to tell me in his own nonverbal way that he was really getting tired of fighting.

Making Decisions

Jack being happy, being able to smile, and maintaining a certain quality of life at home were some of the top criteria my husband and I used in our assessments of Jack on a daily basis. Once those things seemed to slip further and further away, we knew it was time to have an honest talk. Having to say out loud to each other, “I just want Jack to be comfortable, I don’t want to keep putting him through such invasive interventions,” was one of the hardest things either of us had ever had to say out loud. But getting those things out there helped us sort out where we were going next and what that was going to look like for our entire family.

The final piece of the puzzle for us was a CT scan that confirmed swelling on the brain, as well as lesions on the brain. It was clear that Jack’s mental status was not ever going to go back to the Jack we knew and loved. Any further interventions at that point would have been more for us than for him. And as much as we wanted to keep him with us forever, we knew that we had to make the right decision for him, and that was to let him go.

Palliative and Complex Care Support

We had tremendous support from both our Complex Care team and the Palliative Care team, who talked us through what the picture would look like for Jack (and us), regardless of what decisions we made. It gave us an opportunity to ask a lot of questions and feel like we knew the outcomes based on every scenario. The Palliative Care Nurse Practitioner talked us through what it meant to stop interventions and withhold care, such as all medications, except those that kept him comfortable.

Even though we were at peace with our decision and knew deep down we were doing the right thing for our child and his situation, it was the most gut-wrenching experience. We had spent 4 ½ years fighting around the clock for this little guy and it felt so backward for us to be sitting in the hospital with him doing absolutely nothing. Ultimately, we were able to snuggle with him for his final 24+ hours, and it gave us a lot of time to put things in perspective. We were also able to make foot molds and some fingerprint artwork before he passed that I will treasure forever.

If I have any regrets, it would be that looking back, we could have and should have moved to a more palliative care approach sooner. I was dragging my feet because I associated palliative care with death and I wasn’t ready to face that. But I know now they could have helped us with many things, and palliative care for kids means you can still pursue any and all treatments you wish for your child.

I hope my words can bring some sort of comfort or wisdom to others who are going through something similar. We parents of kids who are medically complex are warriors and in survival mode most of the time. These skills and coping mechanisms are the things that will help to carry us forward even when we have to let our young fighters go.

Danielle Gerber is currently a stay at home mom of three kids, two on earth and one in heaven. Her oldest son passed away at 4.5 years old due to complications of a severe ARX genetic mutation that caused intractable epilepsy, dystonia, and other complex matters. Danielle is passionate about keeping her son’s memory alive and working to raise awareness of medically complex kiddos plus the hardships their families face. She has recently begun sharing more about her son as well as the memorial fund created for him on Facebook at https://www.facebook.com/jackrgerbermemorialfund/.