Where Alongside Began

Our Family’s Story

The idea for Alongside came years ago, after my son, who was seven months old at the time, had a life-saving surgery. To recover from the surgery, he had to be intubated and sedated for an extended period to keep his little body still so the surgery site could heal. His extubation was very rough, and it took days to get him to the point where he was neither silently-- intubation causes a temporary loss of voice-- screaming from withdrawal nor limp from being over-medicated to keep him calm. 

We moved out of the PICU soon after he was off the ventilator. Moving onto the regular floor felt somehow like we had made it. Although he was drowsy, he was awake and we imagined that each day he would just be more and more himself again. His brother could finally visit. There were toys to play with. It seemed we were over the hump.

A week later, carrying instructions for doing a morphine wean, we were home. We set timers and dosed out droplets and expected that things were only going to get better.

Timers. Doses. Still not getting better.

By this time, the voice that prolonged intubation had taken had returned. The crying was no longer silent, but loud and constant. Very constant. Day and night. So much screaming.

We took him to the surgeon. This man had saved his life. He shook our hands and told us our baby was doing great. We asked if perhaps he had mistakenly left something sharp inside our baby’s body that was making him cry. He assured us he had not, told us not to worry, and sent us home.

Weeks later, we took him to the emergency room. We were sure the more medical eyes were on him, the sooner we’d figure this out. We asked if they’d check his ears for infection, feel his body to see if something seemed amiss. There, a nurse practitioner looked me in the eye and said, “I know parents can get jumpy when their kids have had a rough start to life. My best advice, mom-to-mom, is that you close the door and let him work it out.” We left without waiting for discharge papers.

We took him to our pediatrician. Multiple times. She had visited us every day in the PICU and knew him well. Finally, she said, “I wonder if it’s more like a P.T.S.D. thing?”

That made so much sense. And we also had no idea what to do about an almost-one year old who might have P.T.S.D. Neither did our pediatrician. 

We held that sweet baby day and night. My left arm became his home, as I held him while trying to play with his toddler brother, held him while I tried to work, held him while making dinner, and held him all night while we all tried to sleep. As I write this, my left arm is tingling from the injury that came from all that holding.

I remember thinking that, before this, I had believed that love could solve most problems. We poured love into that little being, but nothing could stop the crying.

He cried for nine months straight. Then one day, after returning from a short, outpatient procedure at the hospital, he stopped. Our house was quiet. He laid on the floor, looked up at his dad and me, and smiled.

We were flabbergasted. We hadn’t done anything differently. We were grateful for the quiet and the return of our happy baby, but we couldn’t understand what had happened.

Many years later, we learned that he had gotten to a developmental stage where, although other places could still feel scary, home was safe. 

We also knew that, although our house was quiet, this was not the end of the story.

Alongside is born

Throughout this experience and beyond, we have carried the idea of other families along with us. As we sat awake at night or powered through a long afternoon with a screaming babe, we knew we couldn’t be the only ones. Where were all the other parents and caregivers who were in our same boat? And what does this look like when the PICU patient is ten? Or 15? What does the impact of these major medical interventions look like for other kids and their families? Why is this experience so isolating? How do we all find each other?

Alongside was born from these questions. For several years, over lunch breaks or late-night research, I tried to find other parents, looked for the right resources, and searched for research that reflected our experience.

In December, 2020, it became clear that it was time for Alongside to grow. I quit my job. I spent the first half of 2021 speaking with families, pediatricians, academic researchers, psychologists, and anyone else who seemed to know something about what I now know is called Pediatric Medical Traumatic Stress (P.M.T.S.). 

After dozens and dozens of conversations, a pattern became clear. The research exists. We know that having a life-threatening illness or injury can lead to P.M.T.S. We also know that P.M.T.S. is a significant source of childhood trauma. We know the traumatic impact of having a child with a life-threatening illness or injury can lead parents and caregivers to have levels of post-traumatic stress equal to or even higher than the child themselves. There are some hospitals that have amazing supports in place for kids and their families, but it’s not yet the reality for most. Most families who have this experience are finding themselves isolated and working hard to find solutions. The goal of Alongside is to help connect these families and build a new way together.