Aspen’s CDH Story
My daughter’s CDH story starts with a 20-week anatomy scan where the MFM doctor told us that my daughter’s stomach and heart were not positioned correctly, and he suspected that Aspen had a Congenital Diaphragmatic Hernia (CDH). Before that day, all prenatal tests showed that my pregnancy was low risk, and my OB ensured us that there were no concerns and everything was going as planned.
We were excited to see our baby girl’s face during the anatomy scan! What was supposed to be the happiest day of our lives turned into a four-hour-long appointment when, after what seemed like an endless scan, the doctor told us that Aspen had a life-threatening birth defect. At the same time, the high-risk doctor couldn’t give us any information on the severity of it and our baby girl’s prognosis. I was only told that the closest place I could safely deliver my daughter was the Children’s Hospital of Philadelphia (CHOP) because none of the hospitals in the NYC/NJ area was properly equipped to handle her case.
Our 20-week ultrasound was booked for Friday, and the worst part of it, besides the suspected CDH, was this huge hopelessness we were being left with for the weekend. The first few days after learning about the CDH diagnosis were filled with tears, fear, and desperation to find the best place and doctor who would give our baby girl a fighting chance. Even though it seemed like we couldn’t do much during that weekend, we accomplished a great deal by learning about CDH and speaking with other CDH families who shared their children’s survival stories with us. This was also when we learned about Dr. David Kays in St. Petersburg, Florida, from his previous patients’ moms and dads who volunteer for Tiny Hero supporting newly diagnosed families. I still vividly remember spending the weekend listening to Dr. Kays’ lectures about CDH and reading all the success stories we could find.
Due to our location, CHOP was the first one to offer us a consultation: we went there for the entire day of tests. We learned that even though our daughter falls into a severe category (her liver was up in a chest cavity), her prognosis was much more favorable than initially thought because she has developed what is called a “hernia sac.” At CHOP, we were given an estimated 6-8 weeks in NICU that would follow a life-saving hernia repair after my daughter’s birth.
A few weeks later, we flew to St. Petersburg to finally meet Dr. Kays and his team for a second opinion. He and his team gave us great clarity of Aspen’s condition and prognosis, explained his approach, and told us that he gave Aspen a 99% chance of survival. Ultimately, we decided to relocate temporarily to St. Pete when I was 34 weeks pregnant. After learning about his approach to managing CDH babies and having numerous conversations with his previous patients’ parents, we decided to entrust our baby's care to Dr. Kays and his team.
Our daughter Aspen was delivered four weeks later and immediately put on a ventilator as expected. What followed after is a testimony to the entire JHACH CDH unit's commitment to saving the CDH babies and giving them a great quality of life. Aspen had her life-saving hernia repaired at four days old, and she was extubated only four days later. After another four days, she was on one of the lowest CPAP settings and started feeding orally, being able to increase her feeds and gain weight steadily. She was scheduled for discharge fourteen days after her repair, and she went home on 0.1 liters of oxygen to keep her comfortable during the flight home. She owes her miraculous recovery to the entire team who cared for her during her stay at JHACH and to two amazing surgeons, Dr. Kays and Dr. Smithers, who were with us every step of her journey.
It took me almost two years to write this update because since our release from JHACH and return home, we have been busy with life and what’s considered ordinary baby/toddler things and their ups and downs. The hospital stay is a crucial first part of the journey, but many parents are concerned about what happens next. Aspen’s story proves that CDH diagnosis doesn’t define your child and his/her future in any way. We are much more careful about getting sick. However, it doesn’t mean that we live in isolation. Aspen just started school, which she absolutely loves, and she goes to ballet every Saturday. She had learned her ABCs and started spelling words before she was 2. Right now, she is a bubbly, happy, and very curious 2-year-old who loves going to the playground, playing with Play-Doh, doing Legos, and going shopping with her parents!
Our family will be forever grateful to everyone at JHACH who cared for Aspen and to all the Tiny Hero and CDH community who shared resources during the difficult time of the diagnosis. Every year, we are looking forward to our checkups with the CDH team, as JHACH will always hold a special place in our hearts.
