By Natalie Inman
Mommy to Dawson
Right-Sided Congenital Diaphragmatic Hernia
Born November 2023
At 30 weeks pregnant and after two incomplete ultrasounds, we were referred to an ultrasound specialist. The doctor told us that day that it appeared our unborn son, Dawson, had a right-sided diaphragmatic hernia. Getting a clear view of all his major organs was incredibly difficult for the ultrasound technicians.
Within the week, we were at Barnes Jewish Hospital for a multitude of appointments. In the beginning, it was difficult to know how severe the hernia was, so we were just hoping for the best at each appointment. Unfortunately, after every visit, we were given worse odds—the severity of his condition appeared to be worse than originally thought. Ultimately, we were told that we would just have to see how things went after birth and hope that he would stay in utero to grow as long as possible.
Honestly, our hopes were that we would receive the best possible outcome and he would be totally fine. We hoped his lungs were larger and had more air in them than the ultrasound showed. We hoped the hernia could be repaired, and after a few days—maybe weeks—we would be home, and he would be recovering. We dreamed he would have a normal life, or as normal as possible.
Luckily, we had time to drive two hours to St. Louis to ensure he would be born at Barnes. He was born on November 16, 2023, at 38 weeks and one day. His birth was chaotic, long, and very scary. From the time we were admitted, they struggled to find and maintain his heartbeat. I had polyhydramnios—too much amniotic fluid—so he was able to move around freely and frequently changed positions. Over 28 hours of labor, they lost his heartbeat twice and had to rush in to adjust my positioning so they could find it. Ultimately, I could only lay on one side for hours, or his heart rate would plummet. Finally, at 9:37 p.m., he was born via C-section.
Everything changed at the time of his birth. Only then did we begin to understand the magnitude of his sickness and the challenges that were ahead. After he was born, his doctors could finally give us more information about the severity of his condition. Reality set in once we had some concrete facts.
He was immediately taken to the NICU for stabilization without a chance for me to even see him, let alone hold him. His lungs were collapsed—one very tiny—he had pulmonary hypertension, and he was barely holding on. A day and a half later, he was placed on ECMO and remained on life support for about three weeks. He was extubated for the first time on Christmas Day, and we finally got to hear him cry. We were in the NICU for a total of five and a half months, and there were a lot of ups and downs during that time. We never imagined he would spend his first six months of life in the hospital, but we are forever grateful that he was treated at Barnes.
Dawson’s journey has impacted almost every aspect of our lives. He was our first child, so having a baby was already going to be a major change—but Dawson’s diagnosis was something we never expected. We knew everything was going to change once we had a child, let alone one with special needs. We’ve gotten used to the feeding tube and giving him his medicine and feeds through the pump. It has been a unique and strange journey, but it’s truly incredible what you can get used to. At this point, it just seems normal. The idea of feeding him with a bottle now would feel so different. Our family has learned how to use the pump for his feeds as well, and they are becoming more and more comfortable with it. It’s been a learning experience for them too.
Dawson is now over 16 months old. He is so strong and determined. This time last year, he was still in the NICU, on oxygen, totally dependent on his feeding tube, and had just gotten his PIC line out. But we left the hospital without extra oxygen needed and he’s now been feeding tube free for an entire month. The feeding tube was our longest and hardest battle, so having it out is so incredible! He’s also very close to walking unassisted. He’s on the move constantly and loves to play! He loves music, dancing, opening and closing doors, talking, waving, and eating. He’s famous in our little Illinois town and gets mentioned anywhere and everywhere we go.
We are so incredibly proud of Dawson and the progress he’s made. We fully believe that he was chosen for us. He is unique and perfect and the strongest little baby. I am a better person because of him, and I have to thank everyone at Barnes for saving our miracle boy so I can be his mom. I feel so unbelievably proud that he’s my son. He fought so hard to be here. It’s humbling and reminds me how lucky we are to have him. Since he’s been home for about a year, we’ve got a pretty good routine down, and I can’t imagine what it would be like without him here. I try to remember all those feelings while he was in the hospital, because I never want to take him for granted.
Our hopes for the future are similar to every parent’s: we want him to grow up as big, strong, and healthy as can be. We were told that the risk for certain developmental problems is higher due to his condition, but that doesn’t mean he will have them. We just pray that he grows up healthy and with as few issues as possible. We want him to know he is loved and that anything he needs, we’ll do. Although we don’t want his condition to define or limit him, we want him to know how truly strong he is—and has been—since birth. We hope he understands just how unique, resilient, brave, and wonderful he really is.
We loved our experience with On Angels’ Wings when they did pictures in the hospital (we’re in the process of planning another session with them!). The pictures turned out great. We felt like the photographer did a very good job making it known that he was in the NICU, but also capturing other elements to take the focus off of the hospital room. The whole program is a great idea. It’s wonderful for any family, but in our situation—being hospitalized two hours away from home and not knowing anyone—it was especially meaningful to have someone selected to come take the pictures. Those images will be cherished forever, and we will be able to show them to him when he gets older. It really was a positive experience, setting everything up was super easy, and we loved it.
One thing I think about now in hindsight is that we likely never would have had professional pictures taken—at least not while Dawson was hospitalized. We wouldn’t have had the opportunity to get professional photos of him before he was six months old, because he was in the hospital the entire time. I’m so grateful we have such wonderful images to remember him when he was little. Although being in the hospital wasn’t ideal, it gave us some positive memories that we will cherish forever.
We would recommend OAW to anyone. What this organization does is important to NICU families because it helps take their minds off of what is going on, even just for a little bit. Having family photos taken was a “normal” thing that many families do after having a baby—and we didn’t think we would get to. The pictures are priceless, and we’re grateful for the ongoing services OAW provides after the pictures are provided too.
