Soren’s Story - Congenital Diaphragmatic Hernia (CDH)
Our CDH story really starts in 2015 when we were expecting the arrival of our first son. We went into our 20-week ultrasound, ready to find out the gender of our baby. Instead, we learned the letters CDH and the devastation that follows this diagnosis. In the weeks that followed, the small amount of hope we were grasping to crumbled as the MRI revealed our son had rare bilateral CDH, which significantly affected both of his lungs, leaving him with almost no lung volume. With surgery not even being offered as an option post-birth, we chose to continue our pregnancy, embracing whatever time we had together. Noah was born at almost 38 weeks. We spent the most beautiful 8 hours together before he became our guardian angel.
After losing Noah to CDH, each of our subsequent pregnancies were monitored very closely by our doctors. Our second son, Graham, was born in 2017, happy and healthy.
We were so happy when we found out baby #3 was on his way in mid-2019 and hoped this would be another “normal” and healthy pregnancy.
We’ll never forget the utter shock during our 20-week ultrasound. We had a great ultrasound at 16 weeks where they specifically checked the diaphragm of our baby, given our history, and we were told everything looked good, so we were expecting more good news.
But sitting in the dimly-lit ultrasound room, I squinted to see the tiny screen on the wall. The sonographer’s brisk pace slowed considerably as she made her way to the chest. Without warning, she turned to us and said:
“I’m so sorry, but I’m seeing another hernia...”
As I stared at the screen, I saw exactly what she was talking about. On the left side of the screen was the baby’s heart. Just to the right of the heart was his stomach. It was something we had seen before.
All of the pain of 4 years ago came flooding back. We were suddenly face to face with the same condition that ripped away so many of our hopes and dreams, along with our first son’s life: Congenital Diaphragmatic Hernia.
After our pregnancy with Noah, we were assured that odds were in our favor. Evidence suggested our odds of having another baby with CDH were a mere 2%. We were assured Noah’s CDH was just a “fluke” that happened during his development. We left that 20-week ultrasound with our specialist telling us we were the first family she’s seen having a 2nd baby with CDH.
Over the following two months, we had countless appointments and trips to our MFM’s office 2 hours away. 6 more ultrasounds, 2 MRIs, 2 echocardiograms, and a handful of other doctor visits and consults. If there was anything to be thankful about this time around, it’s that we were dealing with “just” left-sided CDH, which meant one lung had some room to grow, and our son would have a fighting chance.
After numerous trips and visits to our care team in Madison, we quickly realized even though the odds were “better” this time, survival after birth was still not in our son’s favor.
The gnawing statistics of CDH survival rates, combined with already having lost one child to CDH, kept us doing more research. Through all our research and conversations, one name kept coming up over and over again.
Dr. David Kays - Johns Hopkins All Children’s Hospital, St. Petersburg, Florida.
After our initial research, we were a bit skeptical. His results were exponentially better than all of the other doctors. It seemed too good to be true, but after talking directly to families that worked with him in the past, we started to gain a glimpse of hope.
We agreed we were willing to do whatever we had to do to give this baby the best chance at survival, even if that means going out of state for delivery and care.
Knowing that we decided to explore the option of having Dr. Kays take care of our son.
So in early December at 30 weeks, we came down to Johns Hopkins All Children’s Hospital in Florida. It was 2 days of tests and appointments, and all concluded with our consultation with Dr. Kays. He sat with us for over 2 hours explaining what he does, why he is so successful, and most important, what the team learned about our son through all of our appointments.
Overall, the results confirmed what we had been told at our hospital back home. Our son has a severe left-sided diaphragmatic hernia, with 20% of his liver up. His lung development has been significantly limited by the organs taking up space in his chest. Upon birth, he would need to be immediately whisked away by a room full of specialists that will fight to save his life. He would most likely require life support, and within a few days of life, will undergo surgery to move the organs, repair the hernia, and encourage his lungs to begin to expand and grow.
Most hospitals would give our son a 40-50% survival rate. Because of the expertise and success that Dr. Kays and his team have with this condition, they calmly looked us in the eyes and explained they confidently felt our son would have a 95% survival rate under their care. We were told to expect a rollercoaster and about 2.5 months in the NICU but to plan to bring our son home. The best words any parent can hear. All the anxiety and fear surrounding this diagnosis was suddenly replaced with hope.
Relocating 1,500 miles from our home in Wisconsin wasn’t going to be easy, but it was definitely a sacrifice we were willing to make. We spent a couple of weeks tying up loose ends at home and packed up everything we thought we would need for the next few months.
We arrived in Florida in early January and got settled at the Ronald McDonald House. We met a handful of other CDH families who were also staying there. It was such a blessing to connect with so many families who were dealing with many of the same challenges we were. In the months to follow, this “family” became such an important part of our journey - we are so grateful for the friendships and support we’ve gained because of them.
After months of anticipation, Soren was born on February 4th. There were dozens of people in the massive operating room waiting for him. As emotional and tense as it felt for us, Dr. Kays and his team were confident - watching them put us at ease.
Christie remained on the birthing floor, and I was able to join the team as they brought Soren to his room upstairs. He did well during the first 10 minutes but quickly took a turn for the worst. Dr. Kays made the call to put him on ECMO. They were able to stabilize him, and he rested comfortably for the night. Early the next morning, 12 hours after birth, he had his repair surgery. He was missing about 85% of his diaphragm, so a Gortex patch was used.
Like most CDH babies, Soren’s progress was slow but steady. He was on ECMO for 13 days and on a ventilator for 27 days. As his lungs got stronger and stronger, our attention turned to eating.
Soren struggled to eat on his own from the start due to reflux, but after a Nissen and g-tube surgery, we were able to slowly increase his volume.
After 73 days in the NICU, the day we waited for had finally come -- Soren was finally discharged. A week later, we began the 1,500-mile drive home to Wisconsin as a family of four.
During the first couple of months at home, we were able to wean Soren’s oxygen support. In early August, just 6 months after he was born, we were finally able to be completely free of oxygen tubes!
Soren’s next challenge was to begin eating more by mouth. From the start, he was getting almost all of his formula through his g-tube. Little by little, Soren began to eat more by mouth. We tried a few different medications and finally found a combination that helped. By mid-October, he was drinking everything by mouth and no longer needed his feeding pump overnight.
Soren has continued to thrive. There are some slight developmental delays because of all the challenges he faced in the first few months of life, but with the help of his doctors and therapists, we have slowly started to close the gap.
We made a trip back to Florida in December for Soren’s annual follow up appointment (a little early). His echocardiogram looked good, and everything appeared normal on the chest x-ray. Dr. Kays and the team were thrilled with his progress.
Soren’s first birthday is just around the corner. We are so proud of how far he has come in his first year. Soren is our Tiny Hero, our little miracle, the answer to all of our prayers. We are eternally grateful for Tiny Hero helping get us to the team of doctors that saved his life.
