Looking Beyond Neonatal Intensive Care to Hope

After 52 days in NICU with his baby on life support, Mark Brislin can dream again

There is a point in my afternoon commute where New York City is no longer visible. I put my cell phone down and turn the music up. On some days a sad song brings me back to a time when driving away and leaving our son in the Morgan Stanley Children’s Hospital in New York was so painful. However, most of the time now I focus on the future. I turn right off of the highway and into my little lake community. At the bottom of the hill I pass the baseball fields – on some days they are filled with mini soccer players and on others the weekend warriors are trying to relive their youth.

A few years ago the future did not look so bright. Back then driving past these fields and seeing kids play left me wondering if Owen would ever get to stand on that pitcher’s mound, or even live to see the neighborhood that we had hand-picked for him.

There were many days when I would have to pull over, overcome with the unknown and angry that we had to wait until he was born to know if he would survive. In those days, the idea of him playing sports was an after-thought. Instead, my greatest hopes for him shifted to wondering if he would walk, talk, eat, or even take a single breath without a ventilator.

As I think back, there is not one specific moment that caused me to be more hopeful then others. Owen’s battle with congenital diaphragmatic hernia started so early- he was diagnosed at 20 weeks gestation and as we went along it seemed that every weekly ultrasound brought a new problem to overcome.

I guess I was always hopeful that everything would work out and I couldn’t even fathom the alternative. But through all the ups and downs, I held onto something that one of the residents said to us at the very beginning of our NICU stay. At the time we had been living in Owen’s NICU pod around the clock. We slept on fold-out chairs as a hurricane hit New York and watched as every building except for the Children’s Hospital was plunged into darkness. When it was all over, our son was still on life-support and fighting an infection that would further delay his lifesaving CDH repair surgery. We were terrified to leave his side for even a moment. After days without a real meal or adequate sleep, our resident reassured us that it was okay to step outside for a bit. She said, “If there comes a time when we need to have ‘the talk,’ I’ll be the first to let you know.” Well, for us that talk never came, so my hope never faded.

I’m not going to tell you it was easy, or that I didn’t have my doubts. But I used to dwell on the past, allowing the nightmares and sounds of the NICU to consume me. Much of that has changed. There are still moments or days that set my healing back – a runny nose, a fever, or a flu epidemic create an involuntary protective responses.

Amazingly, most of the concerns are behind us now. Our son’s third surgery has come and gone. A month ago he stood up and walked down our hallway, then turned left and walked across our living room without holding on.

So as I drive past the baseball fields now, I can finally dream again.

Now, I turn the car onto my street, and focus on the picture window in our living room where I see the first glimpse of my little boy. He’s standing on our chaise, his mom bracing him so his excitement doesn’t send him tumbling to the floor. As I walk up my front stairs, he comes into full view, his little blond curls bouncing up and down. His smile makes me pause for a moment, but it’s his words that bring me the most joy. I can’t hear him yet, but I can see him calling me, “Dada, Dada!” When I open the door, my wife places him on the floor and he quickly walks to me. He grabs my leg and climbs up. I hold him in my arms and he excitedly points to whatever happens to be important to him that day. I get to enjoy the emotions of this moment every day. Yet I never take if for granted because I know there are other NICU dads who would love to be in my position.

As I look back out our picture window, the sun is setting and so too are the nightmares of CDH.

I always knew that I wanted to give back in life, even more so after we found out our son’s condition was improving. But I always thought that only millionaires could really make a difference. After hearing from other families about how sharing our story inspired them, I realize that my thought process was so wrong.

It’s easy to say I was hopeful now that things turned out well. If you’re currently in that dark place in the NICU my words may not resonate with you. But know that there are others that have been there, and you do not have to face this nightmare alone. I choose hope because I knew that this was my one and only chance at being a Dad, and I was going to cherish it whether it lasted for a minute, an hour, or a million years.