Owen’s Story - Congenital Diaphragmatic Hernia (CDH)
How do you begin writing a story of survival, especially if it's yours? The side effects of trauma hide behind every corner of your story, making you retreat into yourself and save "healing" for another day. Once you can acknowledge your trauma, allow it to come and go when it needs to be felt, you can begin to heal and tell your story in hopes there is someone out there waiting to heal too.
Our story began trauma-free. My husband and I are two very different people. We found out we were pregnant with our first child a year after we got married. At my 8-week and 12-week checkups, the doctors told me that we should anticipate a healthy pregnancy and baby. "You're young and healthy. There's no need for any concerns." They sent us off with a roadmap for pregnancy and delivery – a pamphlet with hospital information, medications you can take, and a birth certificate we could prepare before the baby arrived. So, when we had our 20-week anatomy scan and only anticipated learning the gender of our baby, we were in total disbelief when we learned that our roadmap was now an uncharted map with no route or destination.
"I see something wrong." It wasn't the best choice of words, but our sonographer was trying to be delicate as the mood in the room shifted from excited to fearful. My husband and I watched our baby on the screen as the sonographer tried to explain, "you see that? That's your baby's stomach, and it's next to his heart" – a boy, our special boy, my son, the first grandson – "his stomach should be over here where it's currently empty." She told us her suspicion was he had CDH – congenital diaphragmatic hernia – we couldn't write the name down fast enough. She wasn't sure of the severity, but our doctor would come in to explain. We saw our sonographer once more when she dropped off a box of tissues in our room. I remember thinking, "What are those for? What are we about to cry about?" My husband was vacant, an empty seat as our new doctor explained the condition of CDH and what our options were. She held my hand as I continued to lay with my belly out, vulnerable and silent, "you've done nothing wrong. If you hear anything today, let it be that you did nothing wrong".
Our 3 options were the start of our journey, the bottom of the tissue box, the darkest moment of our lives we'd had thus far. One: meet with a team of surgeons and begin a plan of care for delivering our "medically complex" baby. Two: get an opinion about FETO surgery – an invasive surgery that occurs while the baby is in utero. Three: terminate the pregnancy. Wait, what? Without taking a beat, I told our doctor the last option wasn't an option at all, not for us. After all, I could feel him. He was moving inside my belly, and I loved him. No, we were going to fight for him.
The next few months were proactive and completely helpless. I got us in to meet with two hospitals and decided to deliver at Texas Children's Hospital in Houston, TX. They had a team of specialist surgeons and nurses trained in CDH. We finalized our stay with the Ronal McDonald House, applied for FMLA, a sick leave pool donation program at my work, and met with our doctor for several appointments. We had MRIs, bloodwork, an amniocentesis performed, and everything always came back normal. No signs of genetic abnormalities, and given the moderate to severe condition of our baby, he had good chances of surviving. Surviving. Who knew hearing the chances of survival would be a moment of celebration for a parent? "Your baby has an 80% chance of survival," as opposed to the 100% chance a healthy baby has. Yes, he has a good chance at surviving, but he will have to put in 100% effort into surviving! If he was going to fight to survive, we were going to give him his best chance. My husband and I became experts in CDH, just like our doctor told us we would be. We read through various blogs, research articles, CDH communities like Tiny Hero in hopes of seeing our baby on the front page as a "survivor."
At 39 weeks, I was induced for labor. The night before our induction, I felt something that I hadn't expected; I felt peace. I had been holding onto our baby for so long, praying for him, protecting him, preparing for him, and finally, when it was almost time to deliver him, I felt peace. I believe God was with me, telling me that I'd done a good job, that I'd nourished him, and allowed him to grow as strong as he needed to be to become a warrior in our world. I was ready as I'd ever been for the next step of our journey.
On December 23, 2019, twenty-six hours later, via emergency c-section due to not progressing, our tiny hero, little warrior, baby boy was born. As expected, he was whisked away by the team of NICU IV doctors and nurses. He was intubated, placed on a warmer, and with a gentle touch, a nurse told my husband, "it's time to go, dad." My husband tentatively let go of my hand to be with our newborn son as I fell asleep for the remainder of my surgery.
In a way, I had prepared myself as best I could for the delivery. I had read and heard enough about the process that I think I was comfortable, or maybe just exhausted, with the delivery process. He was in their hands now…
Unfortunately, CDH doesn't end with the delivery. It starts with the pregnancy, then the delivery, the NICU stay, and then home life. We are at the NICU stage in our story. I did not get to see Owen for the first 24 hours. My care for recovery was far less involved than Owen's, so it wasn't until I yelled at a nurse to let me see my son that I was finally able to. My husband wheeled me across the hospital to his bedside so that I could meet him. It is difficult to write what it felt like seeing my baby for the first time. The vision you have for meeting your baby isn't exactly what you get in the NICU. He wasn't wrapped in a warm blanket with a cute beanie on top of his head. Instead, he was wrapped in wires and tape with a breathing tube down his throat. Monitors were his version of crying; IVs were his version of newborn clothes. You get used to that, though, I guess, the NICU version of things.
His eyes were closed the first couple of days because he was heavily sedated leading up to his correction surgery. He had severe pulmonary hypertension, which was to be expected given his condition. If his heart and lung went into overload, then he'd require ECMO – essentially, life support. So, he remained sedated. On December 26, three days after his birthday, two days after a quiet Christmas, and one day before my birthday, Owen had his repair surgery. I was still recovering from my c-section, so I was lucky to be visited by his surgeon before the surgery and after. "Boring!" Dr. V. exclaimed when he entered my room after Owen's surgery. Owen had enough diaphragm to close the hernia organically. He said Owen was recovering well and did fantastic. He stayed with my family and me for as long as we needed him to. There was no rushing surgeon, off to the next patient, sort of vibe. He was caring and attentive. I knew he'd seen worse cases and wanted to give us the time we deserved after fighting so hard. I'll always be grateful for that. The big hurdle was complete, and now it was time to recover.
For 3 weeks, Owen remained in the NICU. He was bounced around a few times, but he always remained in the Level IV NICU with the same team of doctors and nurses. We got to know our nurses very well. We loved all of them, which I know now is a rarity in this community. We made it to every round to learn about treatment for the day – Owen was always the Rockstar. Little by little, we watched the medicine bags get taken down. We saw him intubated, then moved to a CPAP, and then onto "room air." We got to hold him for the first time when he was on a CPAP; our little scuba diver, we joked. He curled into me when I held him for the first time; it was the first time anyone had held him. We both needed each other. When he finally got his PICC line removed, we were able to dress him. "I hate seeing naked babies! Go get him some clothes", our charge nurse told us. She was excited to see him doing good too. Although Owen's recovery was going better than anyone expected, it wasn't without a few drawbacks.
As any NICU parent knows, there's a seemingly endless dance of one step forward, two steps back. For Owen, that was feeding. He had several episodes of emesis that kept him from going home. He'd eat an entire bottle and immediately throw it all up. Our team told us we should get accustomed to it; it's common for CDH babies to have acid reflux and emesis. I ended up with a dozen shirts from the TCH gift shop due to the number of times I got puked on or accidentally leaked through my shirt because I refused to put him down to go and pump. If I never have to see another milk bank in my life, I will be a happy person. I spent one too many times breaking down over the breast pump, my sobs muted by the sound of the breast pump. I think that's the only time I ever allowed myself to cry. I was surrounded by so many people all the other times, and for my husband, I couldn't break or else he would too. I became a sort of shell of a person, I didn't engage with other NICU moms, and they never really engaged back. Level IV was a terrifying place…there was nowhere else to go if things got worse, so your only desire was to be there, with your child, surviving until you left.
On January 15, 2020, Owen was discharged. Just 3 weeks after he was born. Again, no one could believe it. We were told to expect a 6-week stay at the earliest, but 3 weeks? Who was this tiny hero? We were so excited to bring Owen home. We packed our car with all of our luggage from the Ronald McDonald House and drove home the very same day. It was a 2-hour drive, turned to 4 as we navigated feeding and a screaming newborn in the car. When we got home, Owen didn't stop screaming, and that was just the beginning of our postpartum journey.
Bringing home a medically complex child, having just lived through months of pregnancy trauma, then birthing trauma, NICU trauma, and why not throw in a worldwide pandemic in the mix, is literally the recipe for postpartum depression and PTSD. It wasn't long before I was diagnosed with both when I came home. I struggled with anger more than sadness and over-attachment more than neglect. I swore my husband was going to leave me because I was an absolute disaster, and he had no idea how to help me. Every time Owen cried, we debated taking him back to the hospital. "If he was hurt, did he reherniate? If he screams too much, will the pulmonary hypertension do that really bad thing?" We felt so unprepared to be parents, let alone to a baby with CDH that just spent the first 3 weeks of his life with 24-hour lifesaving nurses and doctors – what the heck could a grocery manager and HR coordinator do to help this child? Eventually, we figured things out, or at least we got accustomed to our new normal. I began taking medication and seeing a therapist while Owen became more manageable with his temper and cries. We ever so slowly began to heal after surviving for so long.
Survival is the word that appears most in our story. Owen survived CDH, my marriage survived trauma, I survived an emergency c-section, and together we survived a life-altering diagnosis. If I'm honest with myself and with you, I run on survival mode. I have not quite taken my foot off the gas pedal. I live in a heightened sense of being. I am cautious, overattentive, and quick to jump into action if I need to. Even though Owen is doing wonderfully and really is a "normal" kid, I think I might always live in survival mode. Maybe, it'll get better, and I can take my foot off the gas little by little but having gone through the experience we did, changed me. I'm not the same person I was at 19 weeks gestation. I'm not even the same person I was when we gave birth. I don't hate the person I've become, but I'm learning to accept her and give her grace. If Owen can beat death in 3 weeks and now become this spirited, curious, music-loving explorer, then I can be proud of the mom that gave him life, sat by his bedside, and continues to give him warm, loving arms to hold him.
If you take anything from this long story of ours, it's that your kid isn't the only one that survives CDH; you do, too. None of this is your fault, and you're doing the best you can, so allow yourself some grace.
With all my love,
Kamille