Deciding to perform surgery on a child is never an easy decision. This choice becomes even harder when the child has multiple complex medical issues. It has to be decided whether or not surgery would actually be beneficial. Can the problem be fixed? Will quality of life improve? Will the child even be able to survive the surgery?
I looked at my beautiful baby in my arms. He was growing. He was learning to smile. He was learning to roll. He was a huge part of our family. We loved him.
All of those positive things could not hide the boy that struggled to breathe. He could not sleep because his weak muscles could not stay open well, and he would gasp himself awake trying to breathe.
The war inside my own head was and still is to this day continuous. We have always wanted what is best for him. We know that his Trisomy 18 diagnosis will inevitably contribute to his death, but how could we say no to a surgery that could help his life be more comfortable. A surgery could also help his death be more comfortable at some point in the future. As much as I hate thinking that my child will die, it is always in the back of my mind. Every decision we make is based not only on the life we want him to have, the life we know he can lead, but also the death we don't want.
His struggle to breathe would eventually cause chronic lung disease, strain on his heart, and a multitude of other problems. I have seen adults with these chronic problems in their final days, and that is that last thing I want for my child. Especially since I knew there was something we could do about it.
We set up appointments with all the surgeons, and a surgery date was set in less than a month. We knew the surgery plan called for two surgeries three months apart. Just two surgeries and things would be better.
Walking into a pre-operative room with your child in your arms, knowing you will have to say goodbye is one of the hardest things I have ever had to do.
Placing trust in people that you know hardly anything about, some you have never met. These are the same people that at times have questioned whether your child should even be living.
Our son was under anesthesia for over six hours. We prayed. We made light jokes. We sat anxious.
The first time we saw him after surgery, he was in the Pediatric Intensive Care Unit. He had a large dressing around his head, and he was intubated, sedated, and on a ventilator. I walked into the room, and all I could hear was the sound of machines. His breathing was quiet for the first time.
For the last seven months, I had been able to hear him breathing from across the room. Others were excited to finally have him breathing quietly. I wanted to be excited. I wanted to be thrilled that he was not struggling. But I was panicked.
I had not realized how comforting being able to hear him breathe had actually become. Prior to surgery I knew he was alive just by listening. I knew he was breathing. Knowing he was breathing kept me calm.
I felt like I lost my ability to know he was alive. I began having trouble sleeping again. I began panicking even going to the bathroom without him…I no longer could hear he was alive.
I constantly had to remind myself of all of the positives that this surgery did for him. This was not about me and my comfort. This was about him and his comfort.
Surgery was successful, and our little boy thrived and developed. It is what he needed. I just needed time to become comfortable with our new normal again. I have learned that we constantly have a "new normal". As soon as I get used to one, we receive a new diagnosis, or a new hurdle, and adjustment begins all over again.