How To Survive Your Child's Life-Threatening Diagnosis

by Sarah Muoio
Originally Published: 
Sarah Muoio

There he was. My five-month old precious baby boy laying lifeless on a stretcher after being diagnosed with a brain tumor. It was an absolute nightmare. My body switched into auto pilot, and all the moments ran together in a chaotic group of memories that I can’t create a timeline for. Somewhere between complete desperation to find answers and an overwhelming, powerful love I had for this child, I had the courage to stand up and be the demanding mother I always criticized. And you know what happened? It saved our son’s life.

My advice comes from the experience of desperately dragging our son from one medical provider to another, getting the same answer when I knew it wasn’t right and watching our little boy fight through a nine-hour surgery. I learned a lot in those 14 days in the hospital and in the days since. The most powerful lesson I learned has not only kept our son healthy, it has kept him alive. Be your child’s advocate. My advice comes from a mother who understands that being a voice for your child can be the difference between the life and death.

1. Trust your gut.

As I watched Anthony continue to vomit over the course of five days, I knew that this was not like any other sickness I had seen. The look in his eyes spoke to me, as if to say, “Mommy, please help me!” We spent the next few days seeing a medical professional at least once a day. Between doctors, emergency rooms, and late-night phone calls to the on-call nurse, I was not taking the diagnosis as a virus as our answer. Did I think they would pin me as the neurotic, first-time mom who was overreacting? Sure! But, did I care? Absolutely not!

I knew something was wrong with my son. I felt it deep down in my gut. And because you know your child better than anyone ever will, you need to trust that gut instinct. I would rather look like a paranoid mom and be wrong a million times than be right the one time I didn’t follow my gut. You know that thing they call mother’s intuition? Let me tell you something: It is real. It’s the reason I can enjoy my two-year-old today.

2. Ask a LOT of questions.

You are not a medical professional; you are a parent. It will be near impossible to process all the information that is thrown at you while, simultaneously, trying to understand why your child is facing this struggle. Ask as many questions as you need to ask to make sure you fully understand what is going on. You will be the professor in the field of health history when it comes to your child as he meets new doctors along the way who know nothing of his past. Be so knowledgeable about their entire journey that you seem to know more than any doctor you meet. You will get there by asking a lot of questions.

3. Your loyalty is to your child.

One of the biggest battles I fought was within my own mind as we debated whether we should move Anthony’s care to Boston. I struggled with this daily. I felt like I was betraying the surgeons who saved our son’s life. But the truth was that they stopped fighting for our son, and now, we were all he had to get him through this alive. As much as I had trusted our team, that trust was broken during his follow-up care. Bringing him to Boston Children’s Hospital was exactly what he needed, and if I had to drive to the ends of the earth and then walk 10 miles to get him there, then that is my job as his mother.

4. Love your nurses.

Our nurses were our lifeline. While Anthony’s doctors performed his life-saving surgeries, his nurses carried him through the many bumps in the road and lead him home to us. Your nurses are the MVP of your team in the game of life or death. Trust them, rely on them, value them, ask them for help. They want to help you!

We treat our nurses as if they were as much Anthony’s parent as we are because we wanted them to fight for our child. And that they did. As I watched one of Anthony’s nurses put herself aside, even if it meant losing her job, and fight for the well-being of my child, I quickly realized that these nurses were our advocates. As much control as they could possibly have over the outcome of this terrible ordeal, they would fight until we left with our child. Love your nurses.

5. Have hope.

You will look at your child and you will feel desperate, sad, and helpless. It will be hard not to fall apart. So, this is what you will do: You will look at your child, laying there in that hospital bed, and you will fight back the tears, and you will smile. You will smile because you know in your heart that your love will bring them through this. And if you don’t know that, you will smile anyway. Your strength and attitude will carry over to your child. They are the biggest part of you. If you are strong, they will be strong. Nothing will give them more will to fight than knowing that you believe they can make it through this. You will all fight together. And if you don’t win, you will have no regrets.

I never understood the power of being a parent until my son came so close to death that it haunts me. I was never a strong person until that is exactly what my son needed me to be for him to fight for his life. I’m not a medical professional, I am a parent. And my child is exactly that — mine. When it comes to your child, do not fear anything or anyone. Advocate for your child. No one will fight for them like you.

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