Maximilian’s CDH Story
They didn't see any signs of CDH at our 20-week scan. Since we originally wanted a home birth, our doctor advised that we get an extra 32-week ultrasound to make sure size wouldn't be an issue. We went for what we thought would be a routine scan on June 24, 2022, just six weeks before our baby was born. After the lab tech completed a lot of silent scanning, we asked if everything was alright, and she said she would send in the doctor. We immediately knew something was awry. When the doctor came in, he explained that Maximilian's heart was pushed all the way over to the left side of his chest cavity, and his liver floated up, which was compressing his lung. He then said he believed that Maximilian had a congenital diaphragmatic hernia — CDH. Which was completely Greek to us at the time. Fortunately, my sister is an OB-GYN, so I dialed her in to translate. I knew something was wrong when I heard her holding back her tears. We canceled dinner that night and went home to reflect. It was a miserable weekend filled with confusion, despair, and frustration. On that evening, our OB-GYN advised that we would have to pursue palliative care and apologized that we were going through this. Forging a second opinion, we were connected to a high-risk pregnancy doctor on Long Island who referred us to Dr. Shelley Soni at CHOP. We spoke that Friday evening and had our first appointment scheduled for the following Tuesday to verify the CDH diagnosis and further understand the gravity of the situation. We were Philadelphia-bound!
The team at CHOP was amazing — professional, caring, and highly informative. They explained that this would not be easy after their thorough testing, but something they see regularly and that Maximilian had a real chance of being just fine. They said that palliative care would never enter their thinking and walked us through the process of delivering there so that he could be immediately stabilized before his repair. We were advised that he would likely be recovering in the hospital for 3-6 months but were overjoyed by the prospect of our firstborn child having a solid chance at life. We went home that Tuesday in a haze of cautious optimism. We were fortunate to find a month-to-month lease on an apartment near the hospital, and a couple of weeks before his due date, we relocated to our new home.
On Friday, August 5th, we went out for a lovely dinner at a highly recommended Italian restaurant, Vetri Cucina. We came home to prepare to relocate to the hospital the very next day, Saturday afternoon. About 10 minutes after we laid down to bed, Victoria's water broke. We sprung up and went to CHOP that night to begin the birthing process. The first part of labor went as smoothly as ever until we hit the 4.5-hour mark of pushing. And at 10:44 am, Maximilian was born sunny-side up! He did not make a sound, which makes your heart sink, but we were told to expect that possibility given his CDH. After a quick snapshot, they passed him through a window so he could be intubated. After a couple of minutes, one of the physicians on the team turned around with a thumbs up. He said the baby was stable and doing fine — I cried. After ten days of monitoring the countless variables and levels keeping our boy stable, Maximilian had his CDH repair surgery done on Tuesday, August 16. Overly eager with anticipation, I was at a loss for words when I got the report from Dr. Flake that everything went well. All I remember hearing was no surprises, and the baby did well. Amazing! Seeing him post-operation inspired quite a different sensation, though. It is quite surreal to see the most precious thing in your life powerless on a hospital bed, with 12 different tubes coming out of him.
But he was alive and well. From there ensued the long days and nights of monitoring his slow and variable progress toward discharge. Rounds every morning and calls every night, hearing all the different numbers — oxygen saturation, gas, AMPS, TCOM, MAPS, RR, PEEP, PSUP, the ventilator changes, and the pharmacy of painkillers and other drugs constantly being pumped into him at various levels to keep him stable. It was a delicate and crazy orchestra conducted by the miracle-making team at CHOP. On August 24th, 18 long days after he was born, he was finally held by his mother for the first time for a whole two hours before she had to put him down. On September 8th, he was extubated. We couldn't be more grateful for all the hospital hands that touched our boy and eventually brought him home. Fast forward two months of NICU visits, seven days per week, early mornings, and exhausting days by his side, we finally brought our baby home with an NG tube and absolutely no medication or supplemental oxygen on Monday, October 3rd. Best. Day. Ever!
Within a couple of weeks, the NG tube was gone and Maximilian had been growing like a weed. Now he has a voracious appetite — he enjoys cuisine from all over the world with a particular affinity for avocado, sweet potato, broccoli, cottage cheese, fish, chicken, overnight oats, any egg scramble, and frozen yogurt treats. He crawls around at lightning speed, plays the drums, and lights us up every day with his infectious laughter and brilliant smile. The road to recovery is long and rocky. For the families who get this diagnosis, with the right team, strength, support, love, and belief in a positive outcome, you will emerge in a world that seems unimaginable at first. The outcome is so different from the beginning. It can be a slow, brutal path in the starting weeks and months, but seeing this blessing in action now makes those days feel like a distant memory.
I'm writing this on his second Thanksgiving Day with us, and we could not be more grateful for our thriving, beautiful boy! He is truly the light of our lives, and we are the happiest parents seeing him smile every single day. Keep the faith, and we wish you all the very best in your journey.
