BY CATHY STEVENS

I’ll start with the sad news so that it’s not lingering out there. My 13-year-old daughter, Halle passed away in November 2023 after living with a complex, rare disease her entire life. She was, as many of our kids are, the bravest person I ever will know. Halle was supported by palliative care for the last four years, and it was game-changing for our family. In the summer of 2019, she had to be airlifted from our beach vacation to a children’s hospital about two hours away because of a truly terrible seizure that almost ended her life. The pediatric specialist in the PICU told us about palliative care and suggested a statewide program in South Carolina. From that point on, Halle’s comfort became our number one priority, and that helped us structure all of her care in the final four years.

I write this blog, though, to share that even though we had quarterly palliative care check-ins and talked for hours about the what-ifs of end-of-life care, those decisions were still impossibly hard in her final hours. I thought I was prepared – and ultimately I was – but knowing that we would not put her on a ventilator did not make it any easier to not put her on a ventilator when Halle was struggling to breathe. Knowing that there would be a day when we’d have to make really harrowing decisions did not make making those decisions any easier.

But, what we did have was the knowledge we needed. We had practice conversations. Our nurse practitioners had walked us through different scenarios. I will forever be grateful for that knowledge because without it, the final hours would have been chaotic.

Halle was doing fine on Saturday, November 4, having just celebrated a fun family Halloween the week before. However, just 2 days later, she started coughing and struggling to breathe. We ended up going to the hospital by ambulance after a long night of nebulizing and at-home oxygen. She had quickly developed full-blown pneumonia. I stayed with her in the hospital that night and felt that even though she was on high levels of oxygen, with the right antibiotics and treatment, she’d recover as she always had before. This was probably our tenth or eleventh hospitalization for pneumonia and they had all ended the same before – a few weeks of wheezing, coughing, nebulizing, and suctioning, but slow and steady improvement.

We quickly realized the next morning that this time was going to be different. We have asked ourselves hundreds of times since then… why was this time different? Was she ready? Was this illness worse? Had she just been through so much with her precious lungs and they couldn’t fight anymore? Was it a combination? We will always wonder, and yet we will never know why this time was not the same as the others.

The PICU doctor that morning gave us the gift of tough love. I cannot imagine how he does that regularly. Until the last hour, I genuinely felt that Halle had a fighting chance, but he came in and said that this was it. At that moment, I was even considering a ventilator thinking “if we could just get her over the hump one more time.” The doctor once again reviewed the ventilator process. He explained that when it came to medical ethics, not putting someone on a ventilator and taking someone off a ventilator are considered equivalent decisions, but that deciding to take someone off a ventilator is often a more difficult decision for parents and caregivers. In the final 20 minutes we knew. We made the fateful decision to not put her on a ventilator and to accept that we had tried everything else.

In her final moments, all her tubes were removed, and her passing came quickly, and, mercifully, it came peacefully. Without the preparation of palliative care, we would not have been able to make the decisions we made. And yet, it was still as devastating as any moment in life can be. Ultimately, I learned, we can be prepared – but not be ready.

Cathy and her husband Erik live in Greenville, SC with sons Anders and Evan. Their daughter Halle lived 13 wonderful years. She was born with a rare CACNA1C disorder and experienced many challenges during her life. She faced them all with great courage. She enjoyed time with her family watching the Atlanta Braves and snuggling as much as possible.