My son Samuel Scott was born on Friday, September 13, 2013 and graced us with his presence for three weeks. In honor of his first birthday I am sharing our story.
We were living in Austin, Texas and found out I was pregnant the day the University of Texas longhorns played the Oregon State University beavers in the Alamo bowl. My husband was born in Texas and I in Oregon. How perfectly fitting and a fun story we would tell for years to come. At the highly anticipated 20 week ultrasound and anatomical screening I was nervous. I was healthy, all previous appointments went well, and baby was growing above average. I already loved our baby and the idea to know the gender was more excitement than I had ever experienced. The ultrasound technician joyfully announced we were expecting a boy! She excused herself and a doctor came into the room. He congratulated us then said the words I will never forget, "we need to discuss a significant issue." The doctor explained, "your baby has a congenital diaphragmatic hernia. This means the diaphragm has a hole which allowed abdominal organs to float into the chest area. The good news is that his heart looks great. The bad news is that his lungs do not have room to develop normally." I waited for him to say, "this is worse case scenario." There was no this is going to be Ok. There was no order to take extra vitamins or go on bed rest to cure the condition. We were moved to an office where we met with a counselor. She explained major surgery at birth would be required and survival rates are 50%. They offered additional testing to identify underlying issues and the option to terminate the pregnancy. We declined further testing and termination. If Sam had any chance of survival we wanted to give it to him. I was transferred to a high risk doctor for the duration of my pregnancy, scheduled additional ultrasounds, and attended a care conference. The care conference was a group of doctors, nurses, surgeons, patient advocates and so on. The room was packed with people who would take care of my family during delivery, Sam's surgery and our stay during his recovery. In the coming weeks we researched and discovered we knew a few CDH survivors. I focused on the most positive outcomes and bonded with Sam. He was an active baby and so good to me. I felt great my entire pregnancy. On my due date Sam was not ready to meet the world so I was scheduled to be induced at 41 weeks.
On September 13, 2013 at 10:12a.m. our second generation Texan entered the world. I got to touch his hand and say, "Hi baby, I love you" before he went to the NICU. My husband and Dad were able to be at his bedside and my Mom stayed with me. At four hours old they transported Sam across town to Dell Children's hospital. He went to the NICU to be stabilized and then the PICU floor to go on ECMO. Two days later I was released from the delivery hospital and able to see my son. The moment I held his hand again and we made eye contact was incredible. He knew my voice. He knew I was his Mom. The next three weeks were slow and fast. We felt constant two steps forward and one step back, but thankful for the net positive progress. Sam was amazing and the care our entire family received was exceptional. We attended rounds meetings everyday and were able to stay in the room next door. I read Curious George to Sam, his Dad washed his hair, and Grandma and Grandpa helped with circulation massage. Sam out performed expectations day after day and made us all proud. During surgery they discovered he had only 20% of his diaphragm which was repaired with Gortex. Once stabilized he came off ECMO. At 20 days old we were able to hold our son for the first time.
I will never forget the weight of his body, the smell of his hair, and how he made me feel like a Mom. The next morning was a lovely sunrise with a sense of peace in the air. Knowing he liked music one of our favorite nurses played Johnny Cash for Sam. Though Sam had progressed through all of the check points and surgery we were at a point they referred to as, "stable in an unstable place." After three weeks of trying to recruit lung development and countless tests and different machines the time had come. My parents held their grandson for the first and last time. My husband held his first born son again. We had hand and feet molds made. I got to hold Sam again. All the machines were removed from his room and staff cleared out. They said to expect Sam to breathe on his own for only five minutes. He kept exceeding expectations and gave us 20 minutes just the three of us. We kissed his lips and told him he didn't have to be strong anymore. We told him we loved him and savored every single moment. Sam in my arms, his Dad wrapped around us, breathing on his own then taking his last breathe was the most beautiful experience I will ever have.