Grayson’s CDH Story
We discovered that Grayson had Congenital Diaphragmatic Hernia (CDH) during our 20-week anatomy scan on February 14th, 2024. This was our first child, and we had no reason to believe that anything could be wrong. Within the first few minutes of the scan, the sonographer became very quiet before mentioning that his stomach was in the wrong position and excusing herself. After what felt like an eternity, a doctor finally came in to inform us that Grayson had CDH. The doctor handed us a thick packet of information and explained that we would need to travel to a larger city for further evaluation. The statistics and section titles in the packet seemed to leap off the page: 60% of CDH cases are associated with other congenital conditions, and there is a 50-70% chance of survival. Questions like "Can CDH babies breastfeed?" and "Can CDH babies lead normal lives?" echoed in our minds throughout the pregnancy and even after his birth.
In the following weeks, we underwent multiple ultrasounds, an echocardiogram, and an MRI. We learned that Grayson’s stomach, intestines, and spleen were all positioned above his diaphragm, pushing against his heart and compressing his lungs. Fortunately, all genetic testing came back normal, indicating that his CDH was likely an isolated incident. Initially, he was classified as mild to moderate at 25 weeks, but this assessment was changed to moderate to severe by the time we moved to a larger children's hospital at 35 weeks.
The entire pregnancy felt like a cycle of receiving bad news, regaining hope, and then being brought down again by more difficult information. At 25 weeks, we also discovered that he had abnormal lung tissue (a Congenital Pulmonary Airway Malformation, or CPAM) that had been misidentified as lung tissue during previous ultrasounds, meaning his lungs were even smaller than expected. There were concerns regarding a narrowing of the aorta, known as aortic coarctation.
He was born via cesarean section at 38 weeks on June 20, 2024. He weighed 7 pounds 14 ounces and measured 20.25 inches in length. Immediately after birth, he was taken to a room with over 20 medical personnel for stabilization. He was intubated and had numerous lines and sensors placed, including a UAC (umbilical arterial catheter), AVC (umbilical venous catheter), and catheter. My husband accompanied him after his birth, but it wasn't until 2 to 3 hours later that I finally got to meet my son.
We were extremely grateful that we had decided to relocate to a larger city with a specialized CDH team. The first few days were a bit challenging. Our son experienced several major crises related to pulmonary hypertension. Each time he became upset, his vital signs would decline, and every monitor in the room would go off. On the fourth day of his life, he underwent surgery. The surgeon successfully removed the Congenital Pulmonary Airway Malformation (CPAM) and repaired the hernia in a single operation. It was determined that he had a size B defect, so a primary closure was performed.
Following surgery, we faced a gradual process of reducing medications, removing various IV lines and sensors, and decreasing respiratory support. We took the time to learn the meanings of each alarm and to understand the function of every machine and medication. From early on, we tried to be as independent as possible during our hospital stay. Throughout this journey, Grayson began to develop his personality. He would smile at the doctors during their rounds, and it truly felt like he was trying to communicate with us when he looked our way.
He was found not to have aortic coarctation, which meant that heart surgery was unnecessary. Before we could go home, the only tasks left were weaning him off respiratory support and teaching him how to drink. Unfortunately, this process took the longest time. He struggled with weaning off respiratory support because his body continued to develop fluid in his lungs. It required significant time and diuretics to reach low-flow oxygen.
Once we achieved that, we could finally start offering him a bottle. Sometimes he would drink almost half, while other times he showed little interest at all. Then, one day, he suddenly stopped accepting the bottle. For a few days, he refused every bottle until we managed to schedule a swallow study. The study revealed that he was silently aspirating on the nipple flow we had been using, indicating that a G-tube would be necessary. He received the G-tube, and we planned to go home within the next few days.
He was allowed to drink from the slowest-flow nipple available, but he showed no interest in it. The night after his surgery, his IV, which was delivering fluids, extravasated, causing his arm to swell dramatically. He received six shots to help dissolve the excess fluid, but he was sore for a few days. It was an awful way to end a difficult experience; however, we were finally able to bring Grayson home the next day.
Grayson came home at 65 days old with a gastrostomy tube and oxygen. On our last day at the hospital, we walked in to find him wrapped snugly in a hospital blanket, and his entire face lit up when he saw us. It was as if he knew we were finally going home.
Since being home, Grayson has thrived tremendously. He is completely off oxygen and has recently started eating 100% orally. Though he is smaller (1-2 percentile), he has met every milestone so far. His follow-up echocardiograms and x-rays taken periodically have shown no signs of pulmonary hypertension or reherniation. Despite being given every reason to feel upset, he is one of the happiest babies you'll ever meet. He loves going on walks, cuddling, talking to people, and watching Mickey Mouse Clubhouse. Looking at him now, you would never guess everything he has been through. The idea of termination was suggested to us multiple times during my pregnancy, and I cannot express how grateful I am that we never considered it as an option. Grayson is truly one of the best parts of our lives, and we cannot wait to continue watching him grow and show the world everything he is capable of.
