Getting a terminal diagnosis for my baby

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I knew things weren’t right when a nurse called me on my cell phone just a few minutes after she sent me to pump milk in a private room and said that the medical team wants to meet with my husband and me immediately in a conference room. My suspicions were confirmed when we walked into a conference room and saw a long table full of doctors who all stood up when they saw us and remained standing until we sat down.

My daughter, Miriam, only 20 days old at the time, was brought to the hospital just a day ago by ambulance because of low vital signs and irregular breathing. She was placed on a ventilator. An attending doctor told us she most likely has an infection that should be treatable, and antibiotics were started right away.

We waited through the evening and night, and as one test after another for various infections was coming back negative, we knew that the chances of it being an infection were getting smaller and smaller. Miriam’s pediatrician came in the next day and confirmed that nobody believes it’s an infection anymore. It was most likely a metabolic disease but probably not a serious one because, according to her, they already tested for all serious ones at birth.

With that hope, we entered the conference room, but as soon as we saw the looks on the doctors’ faces, we knew that that too was incorrect.

The neurologist, who was leading the meeting, told us that they have Miriam’s MRI results back, and they would like to talk to us about the results. He then asked if we’d like him to display the images or just talk about them. We said it was OK to display.

There’s a lot of talk in the patient community about the way diagnosis is delivered because that moment often splits our life into before and after, and every word and every minute of that time stays with us forever.

Thinking back about this question by the neurologist, there wouldn’t be anything wrong if he just displayed the images, but we were grateful for the extra sensitivity on his part — just taking an extra step to consider that seeing horrifying images on the big screen might not be what we want.

He said that the MRI findings point to mitochondrial disease.

I don’t remember what he said next because, as he gave more details, I started to cry uncontrollably, and I think everyone stopped talking for a while. I then asked what is the best-case scenario for Miriam.

The neurologist explained that even in the best-case scenario, kids with her disease would not walk or talk and would die in childhood. He said it in a more sensitive way but this was the meaning. While what he said was absolutely the worst thing we could’ve heard, knowing the truth was best and helped us understand the severity of the disease our daughter had and think about our next steps.

Another doctor who was also at the meeting said that there’s a range and we shouldn’t google anything and we really don’t know yet. While he meant well and he obviously said it in order to make us feel a little bit better. It wasn’t as helpful for us at the time because this was our first time hearing about this disease, and we had no real understanding of what the “range” meant — so it didn’t provide us any useful information and maybe even confused or scared us more.

After the meeting, Miriam’s pediatrician called and said that she knows about the results of the MRI, and she’s really sorry. I asked her too what she thinks is the best-case scenario for Miriam. She was silent. I said, “There’s no best-case scenario here, right?” She responded, “That’s right.”

We read and heard after that many parents would prefer a more hopeful approach as the second doctor gave, but for us knowing a more realistic picture gave more clarity and was more helpful.

We had three other kids at home who also needed explanations and help with coping. We didn’t want to mislead them or ourselves. Knowing what we were dealing with also helped us find the best way to explain things and support our other kids in the right way.

We found it very helpful that Miriam’s doctors involved the palliative care team right away. While her regular doctors focused mostly on her symptoms, the palliative care team came in to see us daily and checked in with us about how we were coping and how our kids and how our family was doing as a whole. They also participated in our meetings with regular doctors and were available to discuss with us what was said and what we thought and understood.

We have learned after a repeat MRI several days later that Miriam’s disease progressed even further in just a few days and that she was dying. Her neurologist, who was older and has seen it all, cried as he gave us the news.

We could choose to turn off her life support at that time. After consulting with our rabbi, we decided not to turn off her life support, while also not giving her any life-prolonging measures. While this was very difficult and took another month, this month was also peaceful in its own way as we had many visitors coming to see us and to see Miriam, and these memories are with us forever.

We also really appreciated it that Miriam’s regular medical team came in to see her every single day, even after we all knew there was nothing more they could do for her. They still checked in to make sure she was comfortable, asked how we were doing, and gave us a chance to ask any questions.

After Miriam’s death, we got another visit from the palliative care team who gave us some information on how to be in touch and also an option to meet with Miriam’s doctors again in case we needed any closure, even with an opportunity to do it outside the hospital. At the time, we didn’t do it as we just spent a month in the hospital and wanted to be home as a family away from medical things. But still, it was very helpful to know that this was possible and we believe it can be very helpful to many people.

I was recently asked by someone if I often think about those days in the hospital. Indeed, our experience was shocking and traumatic. Our kids, who have always thought that only older people can die, have suffered deeply and lost their innocence. And in many ways, we did too.

For some time after we lost Miriam, I had to resist the urge to keep checking on my kids over and over as they were sleeping. When I finally fell asleep, I saw nightmares with a lot of violence and death.

As I woke up in the morning, all the events that happened would spin through my mind like a movie. I was afraid to walk into my kids’ rooms in the morning, thinking that something terrible had happened to them during the night. It took a real effort and will power to start my day.

Eventually, this thankfully passed. Now, almost three years later, I know that this loss will always be with us. Miriam was beautiful, she was our only girl, she was perfect for our family, and she’s always missing.

Still, my memories of being in the hospital are incredibly sad but also peaceful. In part, this is due to the incredible support and love we got from our family, friends, rabbi, and community. But in a big part, this is due to the clear and honest way we got Miriam’s diagnosis and the support, concern, and compassion from her medical team.

Sophia Zilber is a patient advocate.

Image credit: Shutterstock.com

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