Hudson’s Story - Congenital Diaphragmatic Hernia (CDH)

I'm Hudson, and I'm a miracle, or so I'm told. My mom was 43 years old when I was born. Fertility specialists told her she had a 1.9% chance of getting pregnant naturally, and yet I was conceived on mom's and dad's very first attempt! Mom and dad felt so blessed to learn of my presence!

Shortly after them discovering me, mom got super sick for nearly a month. In retrospect, the doctors think she had COVID. Mom is convinced that is why I had a giant hole in my diaphragm (since it develops during that period, she was so sick she was struggling to breathe, but nobody could prove it since we hadn't even heard of COVID yet). Mom and dad were so scared to hear of this because the doctor who discovered this tried to convince them to abort me. They were told that my chances of survival were low because my liver, spleen, stomach, and intestines moved up through this hole! My heart got pushed all the way to the right, and there was little room for my lungs to grow.

My mom took me to so many doctor appointments. Dad couldn't ever come with us because of COVID. We drove to upstate New York to a specialized radiologist for a fetal echocardiogram and MRI. Like always, I was so active (it was fun to spin around and do back-flips in there, but I punched and kicked mommy because I didn't like the vibrations from the loud noises in that machine!) that the test took way longer than expected. Mom started doing so much research and didn't stop until right before I was born. She was considering moving to Florida, Boston, or Philadelphia because that's where the best hospitals to treat CDH were located (Congenital Diaphragmatic Hernia is also known as that huge hole in my diaphragm I mentioned earlier). These hospitals saw the highest number of patients with the same condition as me. Unfortunately, it was too expensive because our insurance didn't have coverage outside of New York. That's when mom started becoming really nervous and feeling guilty because she worried I wouldn't survive if I couldn't get the best care.

Mom learned as much about CDH as she could and had so many questions for the doctors. In New York, she narrowed it down to Long Island Jewish, Columbia, and Mt. Sinai East hospitals. I got dragged along (sometimes virtually) to at least one specialist in each hospital every week, including pediatric surgeons, neonatologists, pediatric cardiologists, and MFMs. My mom was essentially interviewing them to see who would treat me the best. There were so many wonderful doctors that mom spent countless sleepless nights deciding where my best chance of survival would be. A few weeks prior to my arrival, mom finally picked Mt. Sinai despite the fact that they saw the least amount of CDH patients per year. Universally, the doctors were pretty confused by me as I had both positive (high LHR or lung to head ratio) and negative (liver up) prognostications, and I was categorized as moderate-to-severe. Ultimately, though, it would be up to me to fight my pulmonary hypertension once I arrived.

Mom and dad had faith in me and prayed for me every day. I'm not sure if you believe in signs, but mom did, and she knew Mt. Sinai was the right place because she was thinking of my late Grandma Cerise when just a few blocks from the hospital, grandma's name suddenly appeared on a shirt in a storefront on Madison Avenue. The doctors kept telling mom not to get her hopes up and that despite a good LHR number, it really didn't mean much. Mom refused to believe that she fought hard to make sure her doctors would do delayed cord clamping at my delivery. Speaking of which, there were so many people to welcome my arrival. Mom tried to push me out in a normal delivery room, but the doctor made her stop to be wheeled down to an operating room where there was a large team of doctors prepared to rush and hook me up to a ventilator. I surprised them all and was able to saturate on room air right away, but they kept me on 30% oxygen to not stress out my little body. Mom was happy; I didn't end up needing any of those medications to help manage my pulmonary hypertension. I did so amazingly that they operated on me when I was only two days old. The hole in my diaphragm was so large that I again shocked mom and the doctors when it was discovered that I grew enough diaphragm to allow for primary closure, meaning I didn't need a Gortex mesh patch. Mom was so thrilled as this minimized my chances for a recurrence of the opening as I grow. The occupational therapist who finally let me eat after about 10 days; said in over 30 years, he's never seen a CDH baby take so well to a bottle on the 1st try! I continued to amaze everyone in the NICU when I also latched instantly on our 1st breastfeeding try. The entire NICU heard of me and called me a superstar!

Mom was so worried about silent reflux once I started eating, but the doctors kept assuring her that I was essentially a typical normal newborn. If you didn't look at my X-rays or the scar on my belly, you would never know there was anything wrong with me. I did so unexpectedly wonderful that the hospital kicked me out just before I turned 3 weeks old (mom and dad were initially told to anticipate a 3 to 9-month NICU stay if I even survived in the 1st place). The doctors have no explanation as to why I did so well. Now, do you believe in miracles? I'm living proof of one!