When I first decided to write for Papas of Preemies, my goals were very simple. I knew that in order to heal from this NICU experience and fight off the impulses of post traumatic stress, I had to talk about it but I wasn’t comfortable speaking to a therapist or social worker. It’s just not who I am. So I did what works for me, to write down my feelings, express my thank you’s without having to worry about others seeing the raw emotion inside of me.
My second goal was to spread awareness for kids with a Congenital Diaphragmatic Hernia, or CDH, and hope my story could help promote research so other kids did not have to face the fate of the 50% who do not survive this nasty birth defect.
I was concerned at first that my story would get lost because the main focus was on prematurity, so I set out to understand the comparisons so I could write effectively without losing the audience. The NICU doesn’t care how you got there, the trauma is similar and is only exacerbated by the length of stay and the severity of your situation.
I read through some of the early blogs and I realized that in some cases, there was a moment early in a premature birth where something happened, which created this fight or flight moment for the child and then shortly after a decision had to be made. I read about how in some cases the doctors tried to slow down the pregnancy and in other cases the child took over and decided it was time.
In our story, the moment came very early. During our 20-week ultrasound, the one where we just went to see whether it was a boy or girl, things turned horribly wrong. After hours of ultrasounds and a painful emergency amnio we were presented with a decision – fight for our child and hope for the best, or take the flight option and end it there. There never really was a decision to be made, there was no way we would end the pregnancy so we walked out of the hospital that day and instead of heading to the bakery to pick up a cake for our gender reveal party, we went home to process our new reality. I remember that night – the depth of my pain far exceeded any that I have ever felt.
As the weeks passed, my wife and I researched this terrible predicament and what we found was downright scary. CDH occurs in approximately 1 in 2000-5000 live births, with about a .02% chance on the high side. We found that 50% of the babies do not survive and that all of them need life saving surgery within the first few weeks of birth. If the baby survived the NICU stay varied by how severe the hernia was and also if the child needed ECMO (Extracorporeal Membrane Oxygenation)
which is a procedure that uses a machine to take over the work of the lungs and sometimes the heart.
We knew the situation was dire but we made a decision that we would do the things that needed to be done to prepare for our little boy. It wasn’t easy to walk into a baby store to pick out shower gifts, knowing that you may never get to use them. But we did it, with tears in our eyes, we fought through it and tried to find some sense of joy. The night we painted his room and set up his crib was one of the most traumatic as well. We also made a plan for what we would do with all of his stuff had things not worked out.
Since my wife was now high risk, the normal OB/GYN basically kicked us out. We researched Children’s Hospitals in the area, including the Morgan Stanley Children’s Hospital at Columbia University in New York City and the Children’s Hospital of Philadelphia. It wasn’t a tough decision to choose Columbia, it just worked both demographically and philosophically. Plus, a family friend guided us there since she gave birth to her own CDH survivor there 12 years ago.
As time got closer we would visit Columbia once a week. We did the NICU tour, which was something that really freaked me out. First, I felt bad to be walking through the NICU while other parents were living their worst nightmares. But in the end, I am so glad I took that tour.
On August 24th, at 40 weeks pregnant, we went for a routine OB/GYN appointment. My wife explained to our doctor her concerns about the impending Hurricane Irene
and worries about what would happen if she went into labor during the storm and couldn’t get to the hospital. Ending up in our local hospital that was not equipped to handle a CDH baby could be catastrophic. So the decision was made to have us go home, get our stuff ready, and induce labor that night.
That night we went home and took some pictures in our yard. We rested for a while, knowing that sleep would be hard to come by for the next few months.
At 9:00pm Wednesday night we headed to the hospital, excited yet terrified at the same time. We started the induction process around 10:30pm. Being naive, I anticipated the process taking a few hours and then his life would begin. The faster he got into this world, the faster he could be on to recovering. Sitting in the hospital you would have thought the world was going to end. Weather people were talking about the perfect storm on it’s way to New York City with the chance for unprecedented damage. That night I looked out the window of our room. The waves on the Hudson River churned back and forth like water in a blender. The sky was dark but not yet as threatening as what was to come. My wife and I decided that day that I would try to get some rest because she believed this would take a while and someone had to be coherent enough to make life and death decisions for our son when the time came. I laid down on the couch and closed my eyes, expecting to be woken up shortly.
When I woke up the next morning there was activity in the room. My wife was in bed, watching TV. The pain of the labor was obvious, yet she smiled and gave me an update. She had recently asked for some pain medication and they were getting the anesthesiologist to administer it.
As she was receiving her first epidural my cell phone rang. The number was familiar and not one I could ignore. It was our pet sitter, watching our furry kids at home, while we were going through this ordeal. At least we knew that our dogs were safe and being taken care of. One dog is a diabetic and needs insulin shots, the other has congestive heart failure and takes pills. As you can imagine, I didn’t expect this call so I knew there was a problem. It turns out that the pet sitter’s first dose of insulin to our diabetic dog was 10 times more than the expected dose. Our dog was in insulin shock but stable at our vet’s office. I explained to the owner of the pet sitting company that I was too busy and emotional to be angry about this but once the dust settled we would be having a very unpleasant conversation. I tried to conceal the conversation from my wife, but in our relationship we share everything and deal with all situations together. I explained the situation to her, and as you can imagine she was upset. Here we were getting ready to bring our son into the world, with so much unknown and the last thing we needed was this. We realized that there wasn’t much we could do at the time, so we let it go for now and went back to our current situation. We had to hope that our dog was going to be ok.
Earlier I said first epidural for a reason. It turned out that first shot did nothing to ease her pain and with still over 12 hours to go in her labor she had to feel some relief. Over the next few hours they tried a second and third epidural, but none of them worked. The pain persisted. In many cases this is where we would have thrown in the towel and asked for a c-section and brought Owen into the world. But not my wife, she knew the enormity of this decision. All of the research we did said that a natural birth was better for a CDH kid. The more fluid that was released from his lungs during birth the better chance he would have of limiting his pulmonary hypertension – a condition that becomes fatal in some CDH cases.
Despite the setbacks, she continued on. Finally around 11:00pm on the night of August 25th the pain became unbearable. I was getting concerned that her own health was deteriorating so we called in the nurse to see what was going on. The nurse came in, checked Maria out and walked to the phone. She called the doctors and explained that she was getting very close. Moments later three doctors came in, along with the Transitional NICU nursing staff. It was not a chaotic event, no code blue type of TV over dramatization. It was very calm, they explained to us what was about to happen, that Owen would be born, we’d have a few seconds to see him, snap a picture and cut the cord and then he would be moved to another room across the hall, where after about an hour we could see him. It all happened very fast- sort of a surreal experience. The room was dark with just a spot light focusing on the bed where my son would be born.
At 11:33pm on August 25th Owen was born. As much as we were prepared for the events unfolding, you can never really prepare for your child being taken away and into the NICU. He wasn’t put on my wife’s chest for bonding or pictures, no family members went to a window to see him – when it was all over that spot light was out, the doctors and our son were gone. Only the NYC skyline lit the room. My wife and I sat there, holding hands, taking in the emotional enormity of the day. Just 24 hours ago, my wife was pregnant, the lifeline of the umbilical cord was still attached my son to her. His breathing was controlled and safe, his lungs functioning well. Now, machines were assisting him, invasive tubes were protruding from many of his body parts. Loud monitors and beeping replaced the soothing sounds of the womb. His NICU journey had begun. Later we would see him, and try to comfort him from the pain he endured. We’d wait weeks to hold him, but did our very best to let him know what our role was in his life, changing diapers, taking his temperature, and holding his little hands.
Our NICU story has been well documented through previous blogs shared on Papas of Preemies
. So when I was asked to write this for Life after NICU
I wanted to create something a little different. There are many messages I wish to convey here, whether it be the challenges of knowing early that our son would have a problem, or making people aware of the existence of the CDH diagnosis. Or that not every child in the NICU was born prematurely.
In the end the one message I hope you get is the true heroic effort of a NICU Mom. Whether it was enduring three painful epidurals, none of which eased the physical pain of birth, or more importantly knowing the emotional stress of her efforts having a direct impact on my son’s outcome. I could hold her hand, I could wipe the sweat from her brow. I could cheer her on when I saw that my son was close to being born, but I could not carry the emotional burden of knowing that the child growing inside her may not make it. That emotion does not go away overnight, it may take months or years to get beyond. There should never be a timetable placed on moving on. Outsiders looking in may see the smiles, and the happiness that a child brings, but the true measurement is the window to a mom’s heart. One that has been broken, and repaired so many times throughout their NICU journey.
Mark BrislinContributor and admin, Papas of Preemies
Mark and his wife Maria are the proud parents of Owen, born in August 2011 with a rare and life threatening birth defect known as a Congenital Diaphragmatic Hernia (CDH). They spent 54 days in the NICU at the Morgan Stanley Children’s Hospital in New York City watching their boy fight for his life. On the 54th day Owen came home to Northern NJ. Now that he’s handled his own bout with post-traumatic stress, Mark is ready to share his experience and help other dads cope with life in and after the NICU.