Bennett's Story - Congenital Diaphragmatic Hernia (CDH)
October 16, 2017 was an amazing day. We found out that our second child was a boy! Our oldest is a girl, so we were thrilled to add “boy parents” to our list of titles. October 18th, 2017, we had a gender reveal party for friends and family. I went out and purchased boy clothes, dreamed about who our little man was going to be, and celebrated with our friends and family. And then October 20th, 2017 happened. That afternoon my world was shattered. I received a phone call from my general OB’s office while at work. I was told, “There were some abnormalities on your scan - we don’t know what it is, and we need to refer you to maternal fetal medicine. All I can tell you is that it looks like his stomach is in his chest, and his heart is on the right instead of the left”. I tried to hold it together to call my husband, but I couldn’t. I eventually choked out the news through tears, and we began one of the longest weekends of our lives. We had no idea what was wrong with our little boy, how serious it was, and we were devastated. Before our appointment with maternal fetal medicine the following Monday, we gave him a name - Bennett James - we wanted everyone to know that no matter what we were told at that appointment, he was important, and he mattered. We left that appointment filled with hope! A left sided Congenital Diaphragmatic Hernia. A hernia! It’s not great, but they can fix it with surgery after he’s born! With further research, mostly information from Tiny Hero, it began to sink in that this was much more serious that we initially thought. We had quite the journey ahead.
March 5, 2018 we checked in to the University of Minnesota Masonic Children’s Hospital to be induced. At 6:52 AM on March 6, 2018 our strong little man came into the world at 6 lbs. 15.8 oz into a room filled with doctors and nurses. He gave one short cry and was immediately intubated and stabilized by the NICU team. At one hour old, his records state: "This patient is critically ill with respiratory failure requiring mechanical ventilation, cardiac/respiratory monitoring, vital sign monitoring, lab and/or oxygen monitoring and continuous assessment by the health care team under direct physician supervision.” Bennett had a “honeymoon” period of about 8 hours where he was doing well on a traditional ventilator for respiratory support. But then his oxygen saturation began to dip. It was found that he had a pneumothorax on his right side (his good lung was leaking air into his chest cavity) and required a chest tube to prevent further respiratory failure. Within a few hours he needed the support of an oscillating ventilator. He then spent the next four weeks battling pulmonary hypertension and pneumonia. He wasn’t anywhere near stable enough for his repair surgery. At one point he was described to us as “stable sick”. He was critically ill but managing not to get worse. At that point, his oxygen was turned up to 90-100%, and he was on the highest settings possible on his ventilator. We had the ECMO discussion - there wasn’t any more room to give him more support on the ventilator he was on. And then, on the cusp of needing ECMO, he started a miraculous turn around. He was needing less, and less respiratory support, and his infection appeared to be clearing! His repair surgery happened on March 30, 2018. His surgeons found that all of his large and small intestines, stomach, spleen, and a portion of his liver were in his chest. Due to the severity of his defect, a Gore-Tex patch was required. His surgeons were pleased to find that he had quite a bit of good lung tissue hiding under all those organs! He tolerated surgery well, and his team reduced his amount of respiratory support remarkably quickly after his procedure! He was back on a traditional ventilator about 24 hours later, and we finally go to hold our sweet, strong fighter on Easter, just two days after his surgery. After that it was a blur for a while. He moved quickly from the traditional ventilator to CPAP and then from CPAP to high flow oxygen and he actually skipped from high flow to room air! Amazing how much better you can breathe without organs in your chest!
It looked like it was going to be smooth sailing - FINALLY - after waiting much longer than anyone expected for him to be repaired. But then we hit our next road block. Eating. Bennett struggled to take more that 10-20 mLs per feeding and appeared quite uncomfortable. After trying meds for reflux, propping the head of his bed, and slowing down his wean from his pain/sedative medications, we made the decision to opt for a g-tube to continue working on oral feeding at home. After a routine surgery, we were finally discharged to home on May 20, 2018 after 76 days in the NICU. We continued to work on feeding every chance we got, and I am happy to report that Bennett is now a happy, healthy 10 month old. He is fully orally fed, requires no oxygen support, is crawling around like speed racer and is very interested in trying to walk. His only remaining medication is a very low dose of a pulmonary hypertension medication that his cardiologist is hopeful he will be able to discontinue after cold and flu season.
One of Bennett's neonatologists put it best - with CDH you have to take everything day by day, hour by hour, minute by minute. Each of these warriors has a very different path to make it from diagnosis to life after discharge, and it can be so easy to get bogged down with the “what ifs”. Take it moment by moment. The only thing that’s guaranteed is a rollercoaster of up days and down days - and that you’ll be in complete and utter awe of the strength and resilience of your warrior, your Tiny Hero.
